The details vary, but one theme emerges repeatedly: Obtaining support often depends less on a child’s needs than on a parent’s ability to understand and navigate complex education laws and systems, ask the right questions and persist when answers are unclear.

Last winter, NCLD convened a focus group of Family Leadership Council members representing families across the country. Despite differences in geography and school systems, parents described remarkably similar experiences, including opaque processes, inconsistent communication and a system that left them feeling responsible for navigating special education on behalf of their children. One participant described it as “playing a game I didn’t have the rules to.”

Parents shouldn’t be required to act as case managers

Nearly every parent described being handed forms to sign with little explanation. One mother recalled sitting in meetings “with people who had language I didn’t understand so I couldn’t respond in an educated way.” Another parent spent hours building her own data presentations to prove her child wasn’t making progress — work that felt necessary to ensure someone was monitoring it. 

In special education, families cannot be true partners when they do not understand the rules, processes or terminology shaping decisions about their child’s education. Collaboration requires transparency. Families cannot participate as equal partners when they lack clear information about how and why decisions are being made.  

When schools rely on parents to push for services using sophisticated advocacy skills, that widens inequities for children whose caregivers lack time, resources or English proficiency. has consistently documented disparities in special education access and parent participation based on socioeconomic resources, language proficiency and knowledge of school systems.

Many children in the focus group had more than one disability. Yet parents repeatedly described schools treating a single diagnosis as a catch-all explanation for every challenge a child faced. One mother shared that her district insisted her son’s autism accounted for all his learning needs, despite clear signs of dyslexia. Another parent’s child was initially labeled with a “processing disorder,” only to later receive diagnoses of dyslexia, ADHD and anxiety after an outside evaluation. Their experiences reflect a broader reality: Learning disabilities with conditions such as ADHD, autism spectrum disorder and anxiety disorders — making comprehensive evaluation essential.Ìę

Relying on a single diagnosis delays identification, intervention and learning. Meanwhile, the child continues to struggle academically, emotionally and socially.

Outside evaluations and parent advocacy shouldn’t be the only path to clarity

Five of the 14 children discussed in the focus group received outside evaluations because parents felt their concerns were not being fully heard or addressed. These evaluations were expensive, time-consuming and often the only way families could get answers. Parents described the relief of finally understanding what was going on — and the frustration that it took so much effort to get there.

When schools resist diagnoses or updating evaluations, families with resources find workarounds, while families without resources have no choice but to wait. And waiting has consequences, including widening skill gaps, increased anxiety, and a growing sense of failure in children who are trying their hardest. They are not lazy or unintelligent; they’re struggling with needs that have not yet been adequately identified or addressed.Ìę

One of the most powerful themes was how many parents grew into advocates not just for their own children, but for others. Several now work in organizations supporting families navigating the special education system. They do this because they know “what happens when children don’t get the services they need.” They have witnessed the consequences firsthand.

But their stories raise an important question: Why should families have to become advocates simply to secure appropriate support? Parent advocacy is valuable, but it should be a safeguard when systems fail, not the force that makes them work.

What schools can do differently starting now: 

The stories parents shared point to clear, actionable steps schools can take to make early learning disability identification more transparent, equitable and respectful of families’ experiences. 

• Communicating in plain language. Parents need to understand evaluations, timelines, and their rights before making decisions.

• Evaluating the whole child. One diagnosis should not prevent further assessment when concerns remain.

• Make progress transparent. Families should receive regular, understandable updates about goals, growth and next steps.

The parents in NCLD’s focus group were persistent, resourceful and determined. Many eventually secured the services their children needed. But children should not receive different opportunities simply because one family knows how to navigate special education while another does not. 

Advocacy matters. Yet it should function as a safeguard, not a requirement. Schools cannot eliminate every obstacle families face, but they can ensure that access to services depends on student needs rather than parental advocacy skills. That’s not just good practice. It’s a matter of educational equity.

In February, on orders from the U.S. Department of Government Efficiency, Medicaid officials created a first-of-its-kind online portal containing hundreds of millions of billing records that supposedly would allow everyday people to crowdsource investigations into healthcare fraud.

“DOGE is not a department,” Elon Musk . “It’s a state of mind.”

At the time, thousands of heavily armed federal agents were smashing into cars and battering their way into homes throughout Minnesota’s Twin Cities, under the guise of investigating what the Trump administration insisted was unchecked fraud in autism therapy committed by Somali immigrants.

There was a grain of truth: Fraud is indeed widespread in autism therapy, something a series of federal audits begun during the Biden administration found in red states and blue. In the wake of the audits’ release, the Trump administration raided autism centers, blaming lawless immigrants, welfare cheats and “woke ideology” for the scandals unfolding nationwide. 

But a 74 investigation found another problem entirely: a massive influx of private equity players capitalizing on the autism therapy industry to the tune of $7 billion in taxpayer-funded Medicaid payments over the course of six years. And much of this explosive growth has come at the expense of children.

The explosive growth of applied behavior analysis

Âé¶čŸ«Æ· downloaded the 275 million-record DOGE dataset and analyzed Medicaid claims for autism therapy from 2019 to 2024. Our analysis reveals how an unproven, even harmful, behavior modification system called applied behavior analysis, or ABA, is crowding out more effective — and humane — treatments for children with autism.

And it shows how a well-intentioned campaign by parents desperate to find a “cure” for their autistic kids has mushroomed into a poorly implemented but extremely lucrative mechanism for providing ABA — a system of rewards and punishments designed to eliminate certain behaviors — to as many autistic children as possible, regardless of their age or actual needs. 

Pediatricians, psychologists and other professionals who diagnose autism reflexively prescribe ABA to parents, typically unaware that there is mounting disagreement about the therapy’s effectiveness and the associated trauma that can follow an autistic individual into adulthood. Told this is the child’s best chance at a decent life, few caregivers question the guidance until harmful effects start to show.

Experts consulted by Âé¶čŸ«Æ· weren’t surprised by our findings. Health officials turned on the fiscal taps before instituting meaningful legal oversight — creating the exact kind of loosely regulated environment that draws the opaque investment strategy employed by private equity. 

A secretive corner of the financial sector not held to the same standards as exchange-traded stocks, bank loans and other publicly monitored investments, private equity has acquired businesses in numerous industries over the last decade, hoovering up billions of dollars. 

Private equity typically acquires privately held companies that have access to steady streams of revenue, extracting as much cash as possible in the short term and leaving debt when investors move on. To maximize profits, they often deliver the easiest, most lucrative services, rather than the personalized treatments Medicaid and other public funds were supposed to pay for.

From 2019 to 2024, Âé¶čŸ«Æ· found, Medicaid claims for the six most common autism therapy billing codes shot up some 381%, from $400 million a year to nearly $2 billion — with private equity-backed providers leading the billing pack.

Indeed, federal begun in 2022 — two of them in blue states and two in red — reveal a very purple problem. They detail how bad actors in the for-profit business sector, whether greedy or merely inept, push autistic children toward ABA therapy at the expense of other, more effective supports at school that students with disabilities are guaranteed by law. 

Families whose children are referred to ABA by pediatricians and other providers are typically urged by private therapy centers to sign them up for as many hours as possible — up to 40 hours a week — and to keep them there for years. That is a prescription ripe for exploitation, says Ari Ne’Eman, an assistant professor of health policy and management at Harvard’s T.H. Chan School of Public Health and former director of the Autistic Self-Advocacy Network.  

“Private equity was attracted to ABA because the industry as a whole had set up a very tidy financial arrangement for itself,” says Ne’Eman. “It’s not that private equity is corrupting a previously fine field. Private equity entered the field because of the flaws that were already there.” 

For fiscal year 2026, federal spending on special education . If the $2 billion now being spent every year on ABA for children with publicly subsidized health insurance were added to schools’ annual budgets, every district in the country could add one full-time and one half-time occupational therapist — specialists in desperate short supply who have proven success in addressing many issues facing autistic children.

DOGE’s intentions notwithstanding, many in the autism community have hoped the crisis posed by runaway Medicaid spending might present an opportunity to take a hard look at how ABA has grown into an industry with the fiscal might to stave off even basic state and federal oversight. And how it is crowding out more effective, humane alternatives, and even preventing children from going to school.

Instead, now they fear that politics will further overshadow needed autism therapy reforms. The second Trump administration has withheld some $3 billion in Medicaid funding from California and Minnesota, insisting that their governors — whom the president views as foes — are not attending to fraud. As a consequence, people with disabilities have already lost services. 

As the Medicaid cuts in Trump’s One Big Beautiful Bill go into effect, and as he and Health and Human Services Secretary Robert F. Kennedy Jr. continue to promote disproven and dangerous “cures” for autism — at the cost of research into better treatments — disability advocates fear the future will look a lot like a dark past.   

ABA claims vastly outpace spending on autistic people’s quality of life

In addition to the financial boondoggles, there’s a human cost. 

During the six years of records we analyzed, Medicaid billing for ABA therapy totaled nearly $7 billion. That’s $1 billion more than the United States has spent in 20 years on research and programs under the Autism CARES Act, which pays for services to better autistic people’s lives.   

As disproportionately small as the CARES Act funding is, even after two decades of lobbying by autists and advocates, very little of it is spent on . Of the $2 billion appropriated last year, to be spent over five years, $30 million will go to creating support for caregivers, $13 million to job training and $19 million to safety and well-being.    

Now, even that modest pot of funding is imperiled, as Kennedy is redirecting federal resources toward new research on vaccines and other long-discredited “causes” of autism and dangerous, ineffective treatment strategies. 

Meanwhile, is that the most widely used therapy, ABA, is frequently ineffective and . The therapy was pioneered in the 1960s by Norwegian-born UCLA researcher Ole Ivar Lovaas, who used the same regime of rewards and punishments to develop LGBTQ conversion therapy — now widely acknowledged as abusive.

Independent researchers and autistic adults who went through ABA say its focus on “extinguishing” natural and frequently beneficial autistic traits and in their place demanding compliance with “normal” behaviors is traumatizing. Much as conversion therapy can’t change a person’s identity but can instead instill shame, behavior conditioning will not make autists nondisabled and sends the message their strengths are unimportant.

Lovaas is one of two early autism researchers whose histories are now known to include ties to Nazi Germany. In interviews, Lovaas said that during the five-year German occupation of Norway, he and his family were forced to labor on farms. But a 2025 report in the journal History of the Human Sciences documents his role as a local of Norway’s Nazi youth movement. The Third Reich sought to “euthanize” autistic people, who were seen as a financial and genetic burden to society.  

The other autism researcher who played a role in the Nazis’ eugenics campaigns was Dr. Hans Asperger, who reported of “malformed children” to be targeted for sterilization or death. 

Proponents are quick to assert that today’s ABA is a far cry from the slaps and electric shocks of what was known as the Lovaas Method early on. Yet the goal — to “extinguish” autistic traits in children— typically remains. Kids as young as 2 are routinely subjected to as many as 40 hours a week of repetitive behavior modification drills.   

A past 74 investigation found that for years, the evidence used to legitimize ABA was produced by the industry itself, was rife with undisclosed conflicts of interest and neglected basic guardrails such as documentation of harmful “adverse events.” By contrast, independent research into ABA by the and academic scholars found little to no evidence of effectiveness.

A of 460 autistic adults and caregivers of autistic children found that nearly half of those who went through ABA showed symptoms of post-traumatic stress, while 72% of those who did not participate in the therapy were asymptomatic.   

, researchers at the University of Wisconsin-Madison, Ohio State University and the University of Texas at Austin found that people who had participated in ABA before age 18 were 30% more likely to experience a mental health hospitalization than autistic people who had not. Autistic people who had been treated with ABA and hospitalized were also admitted with 32% greater frequency than those who had not.   

Again, says Ne’Eman, the industry is predicated on a flawed, but very profitable, model. ABA industry recommendations call for every child, regardless of how young they are or what their needs are, to receive the same intensity of treatment.     

“I would argue that ABA is potentially harmful in any situation because we haven’t really addressed the ethical concerns of the potential mental health consequences,” says Ne’Eman. “But even if we were to set that aside, the idea that there is an evidence base for applying ABA in all instances without regard to any consideration for age or the types of challenges that someone has, it’s just ludicrous.”

“Forty hours a week of therapy is a full-time job for a 3-year-old,” says Ne’Eman. “It’s harmful for kids and families first and foremost, but I also think it’s a poor use of public funds.” 

When therapy supplants school

The four federal audits of state Medicaid spending show what advocates have long decried: ABA service providers are allowed to keep children in lucrative standalone treatment centers where they are barred by Medicaid law from receiving academic instruction — often for years after they should begin attending school.

Auditors raised similar concerns in Indiana, flagging the case of a child who was referred to ABA in January 2014 at the age of 2 and was still receiving more than seven hours of therapy a day, five days a week, at age 8 — years after they should have been in school. Medicaid payments for this child increased from $52,000 a year in 2017 to more than $185,000 in 2022, when the child was 11, for a total of $677,448. 

(For perspective, state spending on school-based special education services varies wildly and is poorly reported. One often-used estimate is that an average of $26,000 is spent annually on each student with a disability, versus $9,000 per non-disabled pupil.)     

Special education teachers say that when these students show up in a classroom, it’s after years of lost academic instruction. In practice, often this means they will be denied the chance to learn alongside their typically developing peers — a right enshrined in federal law. 

Advocates say the exact number of children in this position is probably unknowable. As a youngster approaches kindergarten age, families are often warned by their ABA provider that taking their child out of private therapy and enrolling them in school will cause regression. Much as homeschoolers often do, these families can sign official documents saying they are taking responsibility for their child’s education.    

In the case of the Indiana youngster, now 11, auditors noted that the treatment plan did not say whether the child attended school, “but had a standardized statement: ‘The patient’s family [has] taken on responsibility for meeting the educational needs of this patient.’ ” 

After the audit, Indiana lawmakers on how much therapy centers could bill per child, and for how much time. Many children have reached or are near reaching the cap.  

A state task force appointed to address issues likely to follow the changes repeatedly heard from parents and advocates concerned about older children who, no longer eligible for Medicaid-funded ABA, would attend school for the first time. As a result, a new law allows private ABA therapists to accompany children to class for a transition period. 

How did the ABA industry get so big?

For the first 20 years after Lovaas announced he had “recovered” — his term for cured — nine of 19 autistic children on whom he had developed ABA, the supposed miracle cure was inaccessible to almost all families. Insurers were not required to cover the diagnosis or treatment of autism.

Then, in 2005, the mother of a 4-year-old autistic boy sat down at her kitchen table and drafted a bill to require health insurers in South Carolina to cover the “gold standard” therapy being touted as a child’s best shot at a “normal” life. Then she enlisted hundreds of parents of autistic children to lobby state lawmakers to pass it. 

was compelling. To afford ABA, then costing $70,000 a year, she and her husband had downsized their house and spent their home equity — plus her entire salary as a law professor — on therapy for their son, Ryan. 

The grassroots push paid off. In 2007, despite ferocious insurance industry opposition, the South Carolina legislature approved the bill — only to have the governor veto it, with just one day left in the session. 

Unumb put out another call. Accompanied by a CNN camera crew, an army of parents flooded the statehouse, demanding a veto override. 

When the vote was cast, Unumb , the lawmakers on the floor turned toward the families in the gallery and gave them a standing ovation.    

Weeks later, Unumb held a summit to teach other parents, who flew in from around the country, how she had succeeded in getting what’s known as Ryan’s Law passed. She spent the next decade working with Autism Speaks, helping to organize families in other states.

The parents had potent lobbying partners. To convince insurers that ABA was not experimental, a growing community of practitioners created an organization, the Behavior Analyst Certification Board, that set standards, bestowed credentials and promoted research. 

The board did not respond to a request for comment.  

Few questioned whether there was an inherent conflict of interest in an industry creating its own proof points. Most people were more focused on the plight of families — and the promise heralded by a miraculous, if frightfully expensive, cure. By 2019, every state required most private insurers to pay for autism services, though with wildly differing benefit levels. 

The bigger turning point occurred in 2014, when the Obama administration clarified that the Affordable Care Act required publicly subsidized care plans, including Medicaid, to pay for autism treatment. 

At the same time, the rate at which children were identified as autistic began rising dramatically. The ACA for the first time required insurers to pay for autism assessments, and improvements to diagnostic criteria helped to identify autistic children whose traits were previously missed. 

An analysis of special education Child Count data shows that between 2011 and 2022, autism’s prevalence rose from 2.3 to 6.3 per 1,000 children, with the greatest increases among those aged 5 to 8 years.

Today, Unumb is the CEO of the Council of Autism Service Providers. The organization, she wrote in an email to Âé¶čŸ«Æ·, “believes ABA providers must continuously earn the public’s trust in caring for children with autism. Genuine fraud, waste and abuse must be called out and punished to uphold accountability and patient safety.”

“Bad actors exist in every healthcare profession, including ABA, but that doesn’t mean they are prevalent,” she added. “Thousands of qualified, ethical ABA providers are at work every day, doing the right thing and making a difference in children’s lives.”

Private equity enters the picture 

Private equity funds are groups of investors who pool their money to buy ownership stakes in privately held companies or real estate. These firms and their deals are subject to far less government oversight than public companies that trade on the stock market. They rarely disclose information about their activity. 

They typically have managers, who make decisions about the businesses they acquire but don’t put much of their own money into the investments. Frequently, the goal is to simultaneously cut costs and increase revenue to create a cash flow for the investors. The businesses are usually resold within three to five years. 

Over the last two decades, private equity has become increasingly common in healthcare, even though the acquisition of doctor’s practices, hospitals, medical equipment manufacturers and nursing homes can . In terms of public oversight, though, all those industries are tightly regulated compared to ABA. 

The mandates for insurance coverage of autism were instituted with very little initial oversight of the quality of services being provided. States that did require providers to be licensed often simply decided to recognize the ABA industry’s internal credentials.

While these standards are often stricter than a provider’s hiring requirements, the practice of adopting industry credentials leaves behavior analysts in charge of overseeing their own members. When, in the wake of a scathing federal audit of its Medicaid billing practices, Colorado recently moved to license therapists, it rejected a suggestion that a newly created oversight board contain outside professionals such as psychologists. Instead, the board will be composed of four therapists and one public member, who can also have industry ties. 

The combination of lax standards and ready cash proved irresistible to private equity firms, which began buying ABA practices and consolidating them into large, multi-state chains. From 2015 to 2024, private equity firms acquired 574 sites run by 147 providers, according to researchers from the Brown University School of Public Health.

Of the 50 largest providers by Medicaid billing in Âé¶čŸ«Æ·â€™s dataset, 23 are (or, in two cases, were) owned by private equity. From 2019 to 2024, their claims totaled $2 billion. 

Private equity firms own 11 of the top 15, with claims totaling more than $1.5 billion between 2019 and 2024. 

The process has dramatically reshaped an industry already in need of reform — in the wrong direction. 

“They have created massive national chains with the primary purpose of extracting high returns in a short period of time,” write the authors of “,” a report from the Center for Economic and Policy Research. “Consolidation gives private equity-owned provider organizations a large competitive advantage over other for-profit and nonprofit providers, as well those offering other approaches to [autism] services.”

“It also gives them more bargaining power to negotiate higher rates for themselves vis-à-vis state agencies, regulators and insurance payers. Some PE firms have used this leverage to extract higher reimbursements under threat of closing down sites in states in which they do not get the rates they prefer.”

Many of the large networks also advertise immediate openings for autism assessments, which they tout as a quick path to enrolling in therapy. Otherwise, according to the National Institutes for Health, the median time a family spends on a wait list for an independent evaluation is a year and a half. 

How private equity works

Some private equity funds take a partial ownership stake in a business that needs cash to expand or improve. But most of those investing in autism therapy are typically buyout funds, which acquire and consolidate existing businesses.

These funds’ managers invest very little of their own money, maybe 1% or 2% of the total. Investors, which often include pension funds and other institutions, put in another 30% to 50%. The rest of the cost of the acquisition is borrowed — what’s referred to as a leveraged buyout.

To make these transactions, a fund sets up a series of companies. Responsibility for the debt is transferred to the company being acquired. 

As the purchased company struggles to make the loan payments, a share of the cash coming in is returned to the investors. Sometimes, the fund managers take out loans on the already indebted business and give the cash to their investors as a dividend.   

Meanwhile, the leaders of the investment fund — whose expertise is typically in maximizing profits — are allowed to make decisions about staffing, levels of patient care, who they will serve and where. 

ABA is supposed to be highly individualized, with therapists continually collecting data on children’s responses to repeated efforts to get them to stop behaviors deemed undesirable, such as hand-flapping or rocking, or to perform actions the therapist wants, like making eye contact. 

This information, gathered by the lowest-rung member of the ABA team, a behavior technician, is supposed to be reviewed by a credentialed provider known as a board-certified behavior analyst, who uses it to modify the child’s treatment plan on a regular basis.       

But in state audits, federal investigators found repeated instances where the therapists’ notes submitted as claims documentation had been copied and pasted, often day after day, bearing the names of numerous different children working with different therapists.

Notes were often signed off by therapists before they had finished the session in question, and Medicaid was frequently billed for unallowable activities, such as naps and lunch.   

For their 2023 report on private equity’s influence on ABA, investigators at the Center for Economic and Policy Research interviewed former employees of one of the oldest therapy center networks, the Centers for Autism and Related Disorders, or CARD. Founded by one of Lovaas’ graduate students, the chain was sold to the private equity group Blackstone in 2018 for a reported $700 million.  

The former employees said that under Blackstone’s management, they were told to prioritize younger children. Not only can smaller kids remain enrolled for several years before reaching school age, they are most likely to be referred for additional hours of therapy per week under the guise of early intervention. 

“They would literally terminate patients in our programs who required lower hours and replace them with those requiring at least 30 to 40,” the researchers quoted one former employee as saying.

CARD did not respond to requests for comment. In a statement to Âé¶čŸ«Æ·, Blackstone said the network of centers was hit by a “perfect storm” of COVID-19-era lockdowns, labor shortages and low insurance reimbursement rates that led to a Chapter 11 restructuring. 

“When it became clear that a restructuring was necessary to put the company on the best long-term path to deliver on its mission, we worked day and night 
 to keep its existing facilities open so the company could continue serving patients,” the statement says.

The statement adds that Blackstone was never involved in specific clinical treatment decisions and had sought to increase pay, reduce caseloads and improve training and operations. 

If an individual center or an entire network is accused of fraud or found to have abused patients, the investment managers who made decisions to maximize profit can’t be held accountable. Just like the debt, liability accrues to the “portfolio company” that owns the actual centers.  

By 2022, CARD had in states with lower Medicaid reimbursement rates and made that put others out of business, shrinking from 250 centers to 100. In June 2023, it filed for bankruptcy and was bought by a group of private investors recruited by its founder.

According to Âé¶čŸ«Æ·â€™s dataset, in 2019, CARD billed Medicaid more than $13 million. In 2024, its Medicaid receipts were slightly less than $2 million.

Private equity’s structure shields investors and ABA network owners from liability

With corporate headquarters in Farmington, Michigan, Centria Healthcare was founded in 2009 as a pediatric nursing provider. When one of its early patients needed ABA, the company created an autism-focused division. Today, it owns centers in 11 states. 

Because the company is privately owned, its finances are largely shrouded in secrecy. But, according to the investor intelligence service Pitchbook and data gathered for the Center for Economic and Policy Research, Centria was purchased in 2016 by Martis Capital, a private equity firm specializing in acquiring North American healthcare providers. Over the next three years, Centria expanded to nine states. 

As part of a 2018 , the Detroit Free Press reported that Michigan’s attorney general was looking into claims that Centria had engaged in improper billing and service provision. The story was based on interviews with former company executives, documents obtained by reporters and allegations detailed in a defamation lawsuit the company filed against some of the past employees. 

The paper also reported that two Michigan counties had after local mental health officials cited the company for billing and care issues and an employee was abusing a child. 

Martis Capital did not respond to a request for comment.  

In a statement to the newspaper, Centria CEO Scott Barry vigorously denied the claims: “Whatever these allegations are, yes, they’re very outrageous, but they’re not true. And we’re trying to do a good job to help kids and help families and help our community.”

At the time, the company was in line for an $8 million job-creation grant secured with the backing of the state’s lieutenant governor, described by the Free Press as a longtime advocate of autism therapy. Five weeks after then-Lt. Gov. Brian Calley made the recommendation, a key company investor hosted a party kicking off Calley’s gubernatorial bid. Guests donated more than $100,000 to his campaign, the paper reported.      

The grant was put on hold while the state investigation unfolded. In March 2019, the state closed the probe, saying that while it had noted potential billing irregularities, there wasn’t enough evidence to merit criminal complaints. The grant was not reissued. 

Three former executives later sued Centria, resurfacing their allegations. Both lawsuits were eventually dismissed by the parties.

In a statement to Âé¶čŸ«Æ·, Centria CEO David Harbour said the company focuses on quality and access.

“Our work is grounded in a commitment to ethical care, clinical quality and supporting children with complex needs — including families who may have struggled to find services elsewhere,” Harbour wrote. “We strive to identify the needs of children, families and the broader healthcare system as it continues to evolve — delivering ethical, individualized care that supports the unique needs of each child and family we serve.”

But Centria doesn’t have to report whether the scandals had any impact on its bottom line. 

“[Private equity firms] have nothing to lose if something goes bankrupt,” says Rosemary Batt, one of the authors of the Center for Economic and Policy Research report and a professor emeritus at the Industrial and Labor Relations School at Cornell University. “If a company gets caught in fraud, it’s just the cost of doing business.”

In 2019, Centria was sold to a different private equity fund, Thomas H. Lee Partners, for $415 million. Since then, according to Âé¶čŸ«Æ·â€™s analysis, the company has been the country’s largest Medicaid biller, bringing in more than $440 million during our six-year window. That’s more than twice as much as the second-largest ABA company by Medicaid revenue, Lighthouse.

Thomas H. Lee did not respond to a request for comment. 

Ryan Leitner, a researcher at the Private Equity Stakeholder Project and the author of a on the ABA industry, worries that states’ efforts to crack down on Medicaid abuses won’t address the underlying cycle that allows investment funds to pass off a business that they’ve saddled with problems.      

“A great place to start is the concept of joint liability between these [investment] firms and the company that they own and operate,” says Leitner. “You need to have assurances that the care is going to meet some kind of benchmark, that there’s going to be some kind of joint liability if there is a problem.”   

Some states, he adds, are trying to give their attorney general or another regulator the ability to stop the sale of a healthcare facility if they determine the company won’t run it properly or if a private equity firm has problems elsewhere. 

Private equity providers gravitate toward high-reimbursement states 

Writing in the January 2026 issue of the American Medical Association journal JAMA Pediatrics, a group of researchers , one showing the prevalence of children with autism diagnoses and the other assigning states “generosity scores” assessing their insurance rules regarding autism. 

Using a commercial deal tracker, they identified 574 autism service delivery sites acquired by private equity between 2015 and 2024, which they overlaid on the maps. The upshot: The states with the highest rates of diagnosis and the most generous benefits have the largest concentration of private equity-owned ABA centers. 

Home to some of the first acquisitions, Colorado, with 6 million residents, had 38 private equity-owned centers, the third-largest concentration in the country and a likely undercount, the researchers noted. Only California, home to more than 39 million people, and Texas, which has 32 million residents, had more private equity-owned ABA centers — 97 and 81, respectively. 

In February, the Department of Health and Human Services’ Office of the Inspector General released the fourth of eight state audits, finding that Colorado’s Medicaid spending on ABA mushroomed from $60 million in 2019 to $163.5 million in 2023. 

The auditors examined claims made in 2022 and 2023, finding at least $78 million in improper payments, plus an estimated $207 million in “potentially inappropriate” claims. 

In Wisconsin, they found $18 million in improper payments in 2021 and 2022, plus $94 million more in potentially inappropriate payments. In Maine in 2023, $45 million in claims were improper and $22 million potentially so. In Indiana, a total of $56 million were improper in 2019 and 2020, with another $76 million potentially improper.

In Colorado, the investigators examined monthly billing records for 100 children, finding improper and potentially improper claims in every case. Seven facilities could not supply individual patients’ diagnoses or referrals.

Two providers — including one that auditors said “was purchased by a nationwide ABA company that subsequently closed all of its ABA facilities in Colorado” — did not respond to requests for records from state and local investigators. 

In the 96 months auditors examined, providers didn’t describe the services in some claims; four providers didn’t submit any treatment notes at all. One facility routinely said a child had engaged with peers even though the therapy was delivered at home with no other children present.          

Numerous bills described unallowed “custodial care,” such as bathing, dressing and eating. In 67 months, facilities billed for one-to-one therapy but described group activities. 

ABA companies in Colorado

In May, the Colorado General Assembly took up legislation aimed at . At an , state officials testified that they believed there were between 410 and 500 clinics but could not say with precision because, unlike day cares, summer camps and similar facilities, autism therapy centers are not required to register with the state.  

In 2025 alone, officials received 35 reports of endangerment, including physical abuse by staff, medication mistakes, inappropriate restraint and a registered sex offender working at one center. But because ABA providers and facilities are unregulated, the state lacked jurisdiction to investigate. 

It might be the tip of the iceberg, the state officials warned lawmakers, because many participants can’t tell their families when something is wrong. At least a third of Colorado children in ABA are nonverbal, and more than 18% are age 3 or younger. 

The bill would create a behavior analyst licensing board and require the state Department of Human Services to craft standards for clinics. The board would consist of three credentialed behavior analysts, one assistant — or technician — and one member of the public. It would grant licenses to people who have been given credentials by organizations created by the ABA therapists associations.

To proponents of ABA, many of whom have nursed concerns that private equity is sullying the public profile of their industry, the bill was a huge win. But to many in the disability community, it was one more step in the wrong direction. They feared that new standards would enshrine a treatment they oppose, crowding out public support for alternatives that may be more effective and humane.       

Two parents submitted imploring legislators to oppose or amend the bill. Both cited ABA’s eugenicist roots and research on its harms.  

“Autistic adults often compare ABA to gay conversion therapy, because the goal is often to make autistics appear less autistic, rather than helping them live safely and comfortably as themselves,” wrote Boulder parent Jenny Thamer. “In fact, both practices were developed by the same founder.”

Among other changes, she asked lawmakers to appoint a licensed mental health professional and an autistic adult “who provides lived experience” in place of two of the three analysts on the board; to require discipline for practitioners who engage in harmful punishments, including physical restraint and seclusion — mostly outlawed in Colorado schools — and to remove references in the bill to ABA as “based on scientific research.”

“This bill will have lasting consequences for autistics for decades,” Thamer concluded. “I respectfully urge you not to expand this system without strong protections, independent oversight and meaningful representation from the autistic people most often harmed by these practices.”

On June 2, Gov. Jared Polis signed the bill without her recommended changes. 

Graphic design by Eamonn Fitzmaurice

This investigation was produced with support from the Education Writers Association Reporting Fellowship program.

Jenny Thamer had low hopes for the meeting called by the superintendent of the Boulder Valley School District to hear from families of autistic students.

From her experience, such so-called listening sessions are often pro forma events, staged more to assuage parents than to actually brainstorm change. 

This one had been called hastily, after a handful of caregivers had complained about persistent problems in their children’s classrooms. 

The meeting was scheduled for the day after Memorial Day, after the end of the Colorado district’s 2022-23 school year. Many families would likely have already left town for summer vacation. 

Worried no one would show up, Thamer and a couple other parents put together an anonymous online survey they could present if attendance was low. 

They need not have feared. Some 50 district parents came, cautiously optimistic that Superintendent Rob Anderson would hear their pain. 

“I have to give him credit,” says Thamer. “He listened to every single caregiver story without interrupting, without rushing people. Like, he was there for it.”

The meeting was scheduled to last an hour, but went on for more than four, as families described repeated phone calls from school staffers demanding they pick up their child midday, kids too anxious to go to school, trauma caused by punishments — and, in nearly every case, schools’ lack of interest in parents’ ideas.

As it happened, Anderson’s own child received special education services. “I could understand not just in a way a superintendent could understand,” he recalls, “but as a parent could.” 

While people talked, administrators and the school board president took notes on poster-sized pads stuck to the walls. At the end of the meeting, the parents presented the leaders with the results of their survey, which drew 65 responses.

Anderson listened. And then he promised to create an autism advisory team made up of parents, community members and staff with a goal of using feedback from autistic people — who usually are not consulted about their own conditions — to change the district’s approaches. Thamer, whose child received special education services, was asked to co-chair the team. 

A year later, Boulder Valley implemented what is likely the nation’s first — and only — neurodiversity policy. Adopted by the school board in 2024, it commits district schools to using “strategies to affirm a student’s identity, rather than trying to ‘fix’ or ‘cure’ them.” The policy applies to all kids, not just autists. 

It’s a work in progress — in part because the policy calls for a sea change in how Boulder schools have approached educating autistic students. Intending to provide good services, the district — like a handful of mostly affluent school systems across the country — had invested heavily in hiring practitioners of an intervention called applied behavior analysis. 

Commonly referred to as ABA, the therapy was pioneered in the 1960s by Ole Ivar Lovaas, the UCLA psychologist who created LGBTQ conversion therapy. Both use a system of rewards and punishments to condition a person to act and appear “normal.” Lovaas’ approach was quickly recognized as a human rights violation when applied to LGBTQ people, but not to autistic kids.

Lovaas did not see autistic children as fully human, which he believed justified using electric shocks, slaps and the withholding of food, among other “aversives,” to “extinguish” atypical behaviors. In a trial now regarded as dangerously flawed, he claimed to have “recovered” — cured — nine of 19 children by subjecting them to repeated 1-on-1 drills for up to 40 hours a week.

The Lovaas Method, as ABA was originally known, is now considered the gold-standard autism intervention. Parents are typically urged to enroll their children as quickly as possible after diagnosis, as young as 2, to give them their best shot at a “normal” life.  

Over the last decade, as laws were enacted requiring insurance coverage of autism diagnosis and therapy, the rate at which children have been identified as autistic has tripled. To serve them, a very profitable and largely unregulated treatment industry has mushroomed, pulling in nearly $2 billion a year from Medicaid alone.     

For-profit ABA is particularly strong in Colorado, in large part because of the state’s history of offering relatively generous benefits for people with disabilities. Because of ABA’s dominance — and the accompanying perception that it is the most effective way of treating autistic children — school districts are increasingly turning to practitioners to staff their special education programs, whether or not it is the proper approach for a particular child.      

Modern practitioners defend the intervention, saying ABA no longer subjects children to physical punishment. Yet documentation of its harms is mounting, as researchers — including autistic adults who underwent ABA as youngsters — gather evidence that the therapy has caused widespread PTSD. Autistic children may no longer be subjected to electric shocks or slaps to the face — and the word “aversive” may sound kinder than “punishment” — but they are routinely denied food, toys and comfort items, as well as adult attention, a strategy practitioners industrywide call “.” ABA providers still frequently restrain children or confine them in isolation — practices recognized as so dangerous and traumatic as to be illegal in most circumstances in Colorado schools.

At the listening session, Thamer presented the superintendent with the results of the survey, which echoed what he had heard from parents in person. One-fourth felt the need to shorten their child’s school day because teachers could not provide a full day’s support, and nearly half had unenrolled or considered withdrawing their children. 

One-third of respondents said they had been asked to pick their kids up early from school for behavioral reasons — some frequently. A fourth said their children had been excluded from field trips and other activities. And 13% had out-of-school suspensions and 9% in-school suspensions.

Some 16% were aware their child had been subject to physical restraint or seclusion — likely a wild undercount, given the number of parents at the in-person meeting who said their kids were restrained several times a week. Historically, Colorado did not require schools to report restraint until two years ago, and still doesn’t mandate data collection on seclusion. 

More than 40% said schools focused on fixing behavior rather than uncovering the reasons for it; paid more attention to students’ “lagging neurotypical skills” than to their capabilities; and used inappropriate instruction strategies. 

The families’ experiences were common, but the opportunity to share and be believed was novel, says Thamer. Many of the caregivers at the listening session were meeting one another for the first time. Many had assumed they were alone in rejecting guidance from the district’s supposed experts, or that no one would believe the “gold standard” in treatment was actually making things worse for their children. 

Just sitting in a room with so many other people sharing the same experiences was cathartic. “I had tears hearing other people’s stories,” Thamer says. “Parents carry a lot of trauma from advocating for their kids.”

‘Daddy, help! Daddyyyy!’ 

One of the parents present was Sarah PirilĂ€. In 2019, she had come home from work to hear her 5-year-old screaming in the basement. He was working with two technicians from a local private ABA center who, in an effort to stop a meltdown, had barricaded him in a room and turned their backs on him.  

This was not a new experience for P, who is being referred to by his first initial to protect his privacy. He had been through this rewards-and-aversives cycle at home, in private childcare centers — which were quick to show the family the door — and even public school-based early childhood education. As he got bigger, so did his meltdowns.          

But on this day, PirilĂ€ says, she heard something very different in P’s screams. 

“Daddy, help,” he shrieked. “Daddyyyy!” 

She bolted down the stairs and instantly recognized that her son wasn’t being stubborn. He was terrified.

A series of realizations crystalized in an instant, she recalls. P was being punished, over and over, for not understanding what was expected of him.

In the process, he had learned to fear interactions where he could become overwhelmed and lose control. And his parents, whom he needed to keep him safe, had invited the people meting out the punishment into his life.

In schools, isolating or confining children is known as seclusion and restraint. The psychological and physical harms are . Most states have laws limiting the practices to rare episodes in which students pose an immediate threat to themselves or others.  

Yet P’s therapists were using the tactic on purpose, in the belief that after enough repetitions — delivered under the guise of benign therapy — it would “extinguish” some of the boy’s autistic traits.

On the surface, the goal seems perfectly rational: Grownups were trying to teach P that following instructions brings rewards. But when he didn’t comply, they’d double down, sensing defiance. The stricter the adult, the more dysregulated the child’s response. 

PirilĂ€ knew ABA practitioners often describe the moment she was witnessing as an “extinguishment burst” — a last willful attempt by children to get their way by ratcheting up negative behavior. If she went to P’s aid, in the therapists’ eyes, she would be guilty of setting back their hard work.   

She faced a horrible dilemma: follow the therapists’ advice and let the moment play out, or listen to her gut and defy experts who could document her poor judgment in a file with P’s name on it.  

In the moment, she chose her son, scooping him up and letting him cry.

She had no way of knowing how hard it would be, even after telling the boy’s private therapists she would no longer tolerate ABA’s strategies, to keep P out of the therapy. 

Over the next seven years, the district would move him to five schools, not counting distance learning during COVID and a year when P was so traumatized that PirilÀ homeschooled him. In all but one of the schools, he was subjected to ABA.

But she had an unlikely ally. The behavior technician who had stood nose-to-nose with PirilÀ in her basement is a man named Blake Ross. And that confrontation marked a watershed moment for him, too.

The core epiphany PirilĂ€ had during the episode was that P’s meltdown had been perceived by the adults as a choice, when in fact it was an involuntary stress response — the fight-or-flight instinct that’s a normal part of the human nervous system. Everyone has it, but it’s especially easy to trigger in a child with an acutely sensitive neurotype. 

Ross adored P. He was devastated to realize the boy was scared of him. “There are protocols for stuff like this,” he recalls. “We were following them, and it was making things worse.”

In the ensuing weeks, Ross and PirilĂ€ came to an understanding. The family couldn’t meet the boy’s needs alone, and Ross was committed to finding a better way to help. Together, they started trying to understand how entrenched P’s fight-or-flight responses were, and what would happen if they developed strategies to help his nervous system avoid that traumatic response. 

Things really clicked during third grade when, with help from Ross, PirilĂ€ started homeschooling P mid-year. With their strategies finally working, the following year PirilĂ€ searched for a classroom where the adults would try what she called “neuro-informed accommodations.”   

In the meantime, seeking the flexibility to use their new approach with other kids, Ross and his wife, Jenn Snow, also an ABA provider, had started their own autism therapy practice. They met with PirilĂ€ and the members of P’s prospective school special educators to talk about their work.  

“Luckily, we found a team that would actually try it,” says Snow. “And to magnificent effect.”

A data-minded mom literally charts a new course

Before she quit her job to manage P’s needs, PirilĂ€ was an engineer and data strategist. Both ABA and special education are supposed to be data-driven. The theory behind ABA — the analysis being applied, as it were — is that therapists record a child’s responses to behavioral drills, routines and tasks, and then use the information to refine their tactics.

An individualized education program, the legal document that spells out how special education will meet a child’s needs, is also supposed to contain quantifiable goals and measures of progress, as well as information on behavior, adult time spent delivering services and the amount of time the student spends in a segregated classroom rather than integrated with typically developing peers. 

All special education parents quickly accumulate boxes of IEP-related documents, but PirilĂ€ had more: reports P’s schools sent home when he was physically restrained or isolated, forms announcing he had been suspended and messages asking her to come pick him up early. 

Because P, like many autistic kids, often refused to go to school, PirilĂ€ tracked his attendance. She also recorded how often he met the school’s behavior goals, his reading and writing achievement, how much time he spent in different classrooms and how many special ed services he received. 

In January 2025, after P had been enrolled in a new district school willing to work with her ideas, PirilĂ€ put 340 pages of IEPs and other documents — 4,000 data points collected over eight years — into a database. The results were striking.

When P was being treated with ABA, he achieved the school’s behavioral goals 25% to 50% of the time. When he was in a classroom where the adults were willing to try PirilÀ’s neuro-informed strategies, his success rate was 75% to 100%.

When he was allowed to spend fewer hours and days in the school environment, his attendance actually stabilized — and his reading and writing scores shot up. As P’s fight-or-flight episodes subsided, he grew more willing to work on his least-favored tasks. As adults listened to him when he advocated for himself, he spoke more frequently.  

PirilĂ€ created a presentation for P’s teachers and aides, with two dozen charts showing how his IEP and ABA interventions fluctuated in effectiveness. There was a one-year window — labeled “autistic burnout” — when P was restrained 20 times, sent home another 20 times and suspended three times. 

But there were also slides listing which specific, neuro-informed strategies were in place when things were going really well: “Physical management is to be avoided entirely”; “Proactive is better than reactive”; “P’s words must work or he will stop using them”; “Flexibility from you = flexibility from P.”

At the start of the last school year, the boy’s teachers stopped pushing ABA, PirilĂ€ says. But when she gave them a draft IEP written from a nervous system response lens, the educators in charge of the planning process rejected it.

Everybody on the IEP team agreed with the support plan, she says. But one team member, an ABA practitioner employed by the district, said they needed to rework it to conform with ABA’s structure. 

In Boulder Valley classrooms, what that has historically meant is that when a student exhibits a problematic behavior, educators must create a hypothesis for why it’s occurring. These hypotheses assume the child is choosing to misbehave, e.g., to get attention or to avoid an activity they don’t like. Then the therapists and teachers create goals that outline the steps of an ABA strategy for addressing the student’s actions.

“The [lead therapist] said the way I wrote it from a nervous system response perspective was much more helpful,” says PirilĂ€. “But then [she] also said that she can’t use that structure, that she wasn’t able to structure an alternative path for families like mine that specifically request non-ABA approaches.”  

The format of a support plan may seem like a small thing to someone who has not struggled to get their child an atypical IEP, PirilĂ€ says. But to her, it suggests the adults in the district are not ready to step away from something that’s not working.  

A shaky substitute for real special ed       

In 2022, the Colorado General Assembly took up a bill to allow families to request an ABA therapist of their choosing be allowed to accompany their child to school. Legislators ended up passing a dramatically amended law requiring districts to have a policy addressing the question. 

The debate, however, revealed that much of the time, schools and families were using private ABA therapy to make up for gaps in special education, childcare and disability services writ large — something also highlighted in federal audits of Medicaid spending in Colorado and several other states.   

Many of the therapists and industry representatives testified that their clients didn’t have time for both ABA and school, attended schools that had declared students’ needs too profound to manage or said that because they were understaffed, they could support autistic students for only a few hours a day. 

The parents who urged passage of the bill said they needed ABA to close a caregiving gap. Several said schools and preschools were quick to demand they pick their kids up midday — sometimes threatening to call the police if they didn’t.

“Schools are happy to abbreviate their day and make this someone else’s problem,” said one. “And I just don’t think that’s right.” 

Other parents said their kids were behind academically because they split their time between a therapy center and school. 

A lack of school staff with autism expertise and of out-of-school caregiving options for families are real problems, says Julie Reiskin, co-executive director of the Colorado Cross-Disability Coalition. But behavioral therapy is not intended to address those problems. 

“We need to have childcare and schools that are not calling parents, that can keep their kid through the whole day,” she says. “But if that’s the need, then that’s what we should be funding, not one specific kind of therapy. 

“We could do it for a lot less money than this,” adds Reiskin. “And maybe the kids will also be having more fun.” 

Lindsey Trott told lawmakers there are more effective methods for helping students than ABA, but that schools lack the resources to use them. She’s now an occupational therapist, but as a teenager in the late 1990s, she was hired by a family that was implementing the Lovaas Method in their home with their nonverbal 4-year-old.

For 10 months, three days a week after school, Trott said in an interview with Âé¶čŸ«Æ·, she would sit with the boy and perform what are known in ABA as “discrete trials” — repetitive drills of tasks like making eye contact or copying a structure made of blocks. She rewarded his compliance with a fruit snack or a cartoon break.

“After a couple of months of working with me, when I would show up at the door, he would cry and run away,” says Trott. “He made no progress.” 

In hindsight, what she thinks the family really needed was respite care. “At the end, I felt more like I was there supporting the mom,”  she recalls. “I would stay and she would tell me things. She was sad and frustrated.”        

That experience was a catalyst. In search of solutions, Trott went on to earn a master’s degree in special education and then two degrees in occupational therapy. When she was training, she shadowed a veteran OT, as the specialists are typically referred to in schools. 

They drove to several small gyms, where the experienced OT stood alongside kids doing simple gymnastics, talking to them about what they were doing. 

“For the first time, I saw nonverbal kids having fun,” says Trott. “And I felt something about what I was seeing.” 

All people regulate their emotions or nervous systems by what’s known as “stimming” — making repetitive motions or noises. In contrast to things neurotypical people do unconsciously, like twisting a strand of hair, autistic peoples’ stims can be dramatic, such as pacing or rocking. Schools and therapists often attempt to stop stims.  

Occupational therapy’s descriptions of this are much closer to PirilÀ’s ideas about the nervous system than to ABA’s concepts. Proprioceptive input — what OT refers to as “heavy work,” like jumping or other activities that engage muscles —  calms nerves and enables self-regulation. Vestibular input — sensory information the brain receives from the inner ear when a person swings or spins, among other motions — facilitates balance and movement.

If schools taught children about their nervous systems, lots of students’ needs would be met, not just the autistic kids’, Trott believes: “If we had a special ed teacher for every grade level and we had an OT for every campus, schools could look very different.”

A 74 analysis of Medicaid billing claims revealed that spending on ABA just for children with this public, safety net healthcare now totals $2 billion a year. If that money were added to schools’ annual budgets, every district in the country could add one full time and one half-time occupational therapist. 

Neurodiversity training goes only so far

One of the first things Boulder Valley leaders did with the input from its Autism Advisory Team was to put together mandatory neurodiversity training for every staff member in the district. 

In a departure from typical practice, a training video was created using input from community members, says Michelle Brenner, director of special education for the district. Two of the four presenters in the video are autistic. Trainers emphasize that understanding what it means to be neurodiversity-affirming is good for everyone. 

The with a discussion of fight-or-flight and other autistic behaviors, which appear when a student feels physically unsafe or — something that is much harder for a neurotypical person to anticipate — socially unsafe.

“When a student engages in those behaviors, often they are trying to tell us, ‘I feel unsafe all the time,’ ” explains a speech-language pathologist. “That is the autistic experience.” 

Then, an autistic high school teacher, Wren Roberts, describes what it is like to go through life in a state of hyperarousal. Indeed, she confesses that she feels unsafe talking on camera. 

“I have spent my entire life learning to hide it,” she explains. “That’s called masking.” 

Just as existing with a continually activated nervous system causes mental health issues, she notes that autistic people who mask experience high rates of depression, anxiety, insomnia and suicidal ideation.  

Up next in the video, an autistic man who volunteers in a district afterschool program outlines how a neurotypical person can figure out whether a student is feeling unsafe, and why. Finally, a high school teacher reminds the audience that while this cycle is often pronounced for autists, “Other students are likely feeling the same way.” 

As progressive as this seems compared with most other districts’ approaches, the mandatory training was relatively simple, says Shannon Gamble, Boulder Valley’s director of multi-tiered systems of support. Her specialty is differing strategies that are used to help students struggling with literacy or other skills.  

District leaders have created an internal data dashboard tracking how often students are restrained, how many are restrained repeatedly, whether teachers and therapists have looked for the “root causes” of repeated problems and other indications that changes are being implemented and whether they are working. 

The training is a start, Gamble says. “A big part of what needs to shift is mindset and understanding, and the way that we view each other and our students.” 

Some families want their children to continue to receive ABA in school. But to others, who continue to push against it, the pace of change can feel glacial, they say.

“Our families come in and they’re like, ‘All right, why don’t you just go tell people to do this thing?’ ” says Gamble. “There’s things we can do right away. We can change [the language on] a form, right?”  

Altering mindsets is a longer-term proposition, she continues: “It’s going to take more than us just telling people what to do — especially things like neurodiversity, where many of our educators were taught in a way that maybe is not what our neurodiversity philosophy is telling them we believe.”

Because district leaders had invested in what they thought was the best intervention for students, a number of the people leading its special education efforts hold some of ABA’s highest credentials. The persistence of their beliefs is visible in district materials.  

For example, families point to an educator training created more than a year after adoption of the neurodiversity policy that makes numerous rewards-and-consequences recommendations even as it acknowledges trauma’s role in children’s behavior. Forms distributed to classroom aides have grids for charting ABA interventions.    

A outlining the neurodiversity policy and resources also links to that outlines Boulder Valley’s ABA strategies: “The behavior analyst is responsible for the implementation of skill acquisition and behavior support strategies aligned with current best practices from the field of applied behavior analysis (ABA) as well as responsibilities and duties within the school special education collaborative team.”

Restraint and seclusion

In 2022, the U.S. Department of Education to avoid restraining and isolating students with disabilities unless a child’s behavior poses “imminent danger of serious physical harm to themselves or others.” Not only are the practices dangerous and abusive, it said, but there is no evidence they help modify disability-related behaviors. 

They are also discriminatory, the agency warned. Students with disabilities are three times more likely to be physically restrained or confined than their non-disabled classmates. Often, they face discipline because they lack proper services. 

In practice, however, it is devilishly difficult to get schools to move away from restraint and seclusion. Over the last couple of years, in several states that of even just preschoolers and early elementary age children, education administrators have lobbied statehouses to repeal the bans.  

Disability advocates push back, saying schools need to do more to support educators who are left without effective alternatives. As a result, when seclusion is prohibited, schools often simply rebrand the spaces where children are confined as time-out rooms. 

How does Boulder Valley stack up? 

Brenner and Gamble say the district’s internal data shows small improvements since the adoption of the neurodiversity policy, including a “slight reduction” in the number of autistic students who are repeatedly restrained and secluded and a dramatic drop in the number subjected to formal threat evaluations under Colorado’s school safety protocol.

But in terms of collecting data on restraint, Colorado’s history is tangled. The state’s first restrictions on when a child could be physically controlled were intended to address solitary confinement and punishment in juvenile detention centers. 

The practices were supposed to be rare in schools, but the state didn’t collect any data that would allow it to measure compliance. In 2022, the Colorado General Assembly passed a law requiring districts to begin reporting by the end of the 2024 school year. 

It did not, however, address seclusion as a specific form of restraint — which all but a handful of districts interpreted as a mandate to report only episodes when a child was physically or mechanically controlled. Legislators rejected a 2025 attempt to clarify the law.

For the 2024-25 academic year, Boulder Valley told the state it physically restrained just 42 students. It did, however, of “detrimental behavior” — conduct that has a negative impact on the welfare or safety of other students or staff —Ìęamong children with disabilities. Students with IEPs make up 15% of the district’s student body, but comprise one-third of those disciplined.Ìę

While ABA practitioners’ stances vary, they often don’t think they are restraining a child but rather — much as took place in PirilÀ’s basement — believe they are engaging in a therapeutic strategy that is to the child’s benefit.   

In 2010, the Association for Behavior Analysis International opposing “inappropriate” restraint and seclusion but supporting the interventions when used by practitioners as part of a formal plan: “When used in the context of a behavior intervention plan, restraint in some cases serves both a protective and a therapeutic function. These procedures can reduce risks of injury and can facilitate learning opportunities that support appropriate behavior.”

In May 2025, Âé¶čŸ«Æ· reported that the Arizona Autism Charter Schools — a network of ABA schools whose founder was chosen by President Donald Trump to oversee special education — restrained and secluded students at unusually high rates even though state law restricted the practice to emergencies.    

Often, when autistic children are sent to “blue zones” or “cool-down corners,” schools fail to see and report it as seclusion. The distinction that’s lost: a space students can retreat to of their own volition when overwhelmed — and leave when calmer — is different from seclusion.

The fact that the district has adopted a neurodiversity policy but also proclaims ABA will remain in place infuriates PirilĂ€. If you ask her, there’s no reason state and local officials can’t do their own version of her analysis of which strategies contributed to P’s dysregulation and which enabled him to stay calm and engaged. They’re just choosing not to.  

‘The most important message’

One of the first things Jenny Thamer did as co-chair of the Autism Advisory Team — a role she played for two years before moving on — was to send out a second survey, consisting of a single, open-ended question: “Please tell us the most important message(s) you or your child want educators to know.”

The replies were consistent: 

“It is our job as adults to figure out why [kids] are not doing well. Children should never be left to figure it out on their own.”

“My child does not need to make eye contact to be listening. He is not avoiding instruction by not making eye contact.”

“My child may look fine on the outside to you, but inside they are almost paralyzed with anxiety.” 

“My child may communicate differently, but that doesn’t mean he doesn’t want to be involved.”

Anderson, the superintendent, says he’s committed to fully implementing the district’s neurodiversity policy. True recognition of the array of ways in which people experience Boulder Valley’s schools will benefit every student and educator, he says, autistic or not.   

“The idea that we understand the challenge and the needs of a neurodiverse community, and that we are locking arms to meet those needs, that’s good for all kids,” he says.    

“This is really hard work. I’m not here to tell you we’ve solved the problems. But these things aren’t hidden anymore. They’re not whispered.”

After publication, the district provided data showing 42 students were physically restrained during the 2024-25 school year.

This investigation was produced with support from the Education Writers Association Reporting Fellowship program.

The coverage mandates these parents helped secure have driven hundreds- and even thousands-fold increases in Medicaid spending on ABA — an unproven, even harmful, behavior modification system that uses rewards and punishments to try to eliminate certain behaviors.

Over the last decade, the ready flow of cash has attracted private equity, a type of investment that purchases large shares of companies that are not publicly traded. Through cost cutting and other restructuring methods, these short-term investors try to boost revenue before selling the businesses for a profit. With scant state or federal oversight, they have also acquired nursing homes, facilities for people with intellectual and developmental disabilities, medical equipment providers and other healthcare industries that rely on taxpayer dollars to profit.      

Now, states — which put few regulatory guardrails on the ABA industry, on private equity’s role in healthcare in general or on Medicaid reimbursement — are cracking down. Even before a series of damning federal commissioned by the Biden administration were released in recent months, lawmakers and health officials have proposed capping the amount of ABA an individual child can receive and how much providers can bill, as well as imposing standards on clinics and therapists. 

As states have revisited Medicaid reimbursement rates and other policies that impact providers’ financial bottom lines, two types of ABA-related debates have played out in statehouses. One involves the ABA industry’s entrance into state-level political spending; the other, efforts by providers and caregivers to require public schools to allow the therapist of a family’s choosing to accompany their student to class.  

The start of statehouse spending 

Individual state legislative races are relatively cheap to influence. While parents have long packed hearing rooms to testify against threatened cuts to autism services, in recent years some of the industry’s largest, private equity-owned ABA providers have begun making campaign donations to candidates for state-level office who could sway legislation on ABA oversight, Medicaid reimbursement rates, whether private autism therapists should be allowed in schools and other laws that impact providers’ profits.  

Lobbying and campaign finance reporting requirements vary widely from state to state. Using records compiled by the political spending watchdog group Open Secrets, Âé¶čŸ«Æ· was able to identify instances when ABA lobbyists donated to state-level campaigns around the country at consequential moments, to benefit the companies the lobbyists represented. 

In 2022, Florida lawmakers passed a law allowing behavior technicians from private, for-profit ABA centers to accompany kids to school — opening a new and potentially lucrative market. While reimbursement rates vary by state, private ABA centers typically bill insurers for behavior technicians’ time at $50 to $100 an hour. Special education classroom aides employed by public schools, in comparison, frequently make about $25 an hour.  

Campaign contributions made that year by two of ABA’s largest private equity-owned concerns, Hopebridge Autism Therapy Centers and Acorn Health, would barely cover a lobbyist’s bar tab at a Washington, D.C., watering hole. 

Hopebridge Autism Therapy gave a total of $10,000 to nine incumbent lawmakers and one challenger. Acorn Health gave $7,500 to the state House Republican Campaign Committee and $3,333 to the Florida Republican Party. 

It was a small expense for two of the country’s largest autism therapy companies, which between 2019 and 2024 brought in almost $200 million — nearly $134 million for Hopebridge and more than $63 million for Acorn, according to a 74 analysis of Medicaid ABA billing records. 

The largest company by Medicaid revenue, Centria Healthcare, was paid more than $400 million between 2019 and 2024, according to Âé¶čŸ«Æ·â€™s analysis. The company spent almost $200,000 in Oregon and Indiana in three election cycles: 2020, 2022 and 2024. 

In 2024 in Indiana, where a federal audit would soon find up to $133 million in improper Medicaid ABA claims from multiple providers, sparking caps and cuts, Centria gave $25,000 to gubernatorial candidate Michael Braun.

As governor, Braun created a state applied behavior analysis to consider ways to rein in costs while continuing to serve autistic children. The group’s membership is dominated by ABA practitioners.

In Oregon, the company gave former Rep. Dan Rayfield $55,000 during his last two terms as House speaker, followed by $25,000 for his successful 2024 run for attorney general. The state House Democratic Campaign committee received $50,000, while 13 other lawmakers got contributions of $1,000 to $10,000.

On the table: A to expand the state’s private insurance autism therapy mandate until 2030 and a to extend Oregon’s ABA mandate to conditions other than autism, such as intellectual and developmental disabilities — potentially opening significant new markets. The law mandating continued coverage of autism treatment was enacted.

The bill to expand the disability categories for which ABA practitioners can be reimbursed faced significant pushback. Testimony submitted to lawmakers included of research on the therapy’s effectiveness for conditions other than autism, such as Down syndrome, cerebral palsy and epilepsy. It concluded the evidence is thin. The measure is still pending in the state House. 

Facing Medicaid rate cuts, Utah Behavior Services (now known as Bridgeway Integrated Healthcare Services) — with Medicaid revenue of some $196 million, according to Âé¶čŸ«Æ·â€™s dataset — spent some $41,000 to influence 21 contests, including state auditor. Action Behavior Centers, which collected $1.7 million in reimbursements between 2021 and 2024, spent $2,500 .  

Must schools allow private ABA in classrooms?

Special education law requires schools to provide “medically necessary” services to children whose ability to attend school and learn depends on them. For the most part, school districts can pass these costs along to Medicaid or another public healthcare plan, or to a family’s private insurer.   

Commonly cited examples are children who need a nurse to manage their airway or feeding tube, or have a condition that requires physical therapy. Historically, ABA has not been recognized as a medically necessary service. Schools typically try to meet students’ behavioral and communications needs in other ways.    

In 2022, two Colorado lawmakers introduced a bill to require school districts to enshrine autism therapy as medically necessary. Administrators from the Colorado Consortium of Directors of Special Education, the Englewood and Cherry Creek school districts and others expressed concern with the bill. 

They would be liable for the in-school conduct of a technician they don’t employ, several of those commenting said. And, most practically problematic, schools would be legally responsible for figuring out how to make up the academic instruction that students would miss while engaging in therapy during the school day.

The General Assembly eventually passed a version of the bill not specifically addressing ABA. Instead, it requires districts to have policies outlining how they will address medically necessary services.  

Louisiana and Pennsylvania recently enacted laws saying schools must accept autism therapy technicians. The requirements are too new to assess results.

This investigation was produced with support from the Education Writers Association Reporting Fellowship program.

On Wednesday, she abruptly stepped down, just as roughly 100 staff members from the office handling the day-to-day management of those programs move from the Department of Education to the Department of Health and Human Services. 

“Acting Assistant Secretary Rogers is returning to her home state of Florida to take on a great opportunity and be closer to her family,” Savannah Newhouse, Education Department press secretary, said in an email. “We thank her for all of her hard work and dedication to bettering education and employment outcomes for individuals with disabilities.” 

Rogers, who oversees the Office of Special Education and Rehabilitative Services, or OSERS, joined the department after leading Florida’s Division of Vocational Rehabilitation. She stepped in to implement the department’s effort to give HHS more control over services for students with disabilities. With HHS Secretary Robert F. Kennedy’s comments about people with autism, parents have been strongly opposed to the move. He has linked autism to and environmental toxins and suggested children with autism won’t grow up to live .

As the mother of a son with autism, she said she could relate to parents’ worries and tried to project calm in the face of what she called “false and misleading information spreading online” about the potential impact of the handover to HHS.

The Individuals with Disabilities Education Act “is an educational law, not a medical law,” she said in a . “This partnership does not and cannot change that. Your child’s rights to a free, appropriate public education remain fully protected.”

But she from most advocacy organizations, who are concerned that the move, part of President Donald Trump’s long-range plan to eliminate the Education Department, would create confusion for districts and families. The department did not respond to questions about who would replace her. 

On Wednesday, the department from Erin McHugh. deputy director of the Office of Special Education Programs, who shared a report from the office’s August conference in Arlington, Virginia. The agreement with HHS, she wrote, will increase “access to critical wraparound services and the use of research to inform early intervention and special education practices.”

But members of Congress are also skeptical and have taken steps to prevent the transfer. In late July, the Senate education committee advanced a bipartisan bill that would keep oversight of K-12 and services for students with disabilities at the Education Department. So far, it’s not scheduled for a full Senate vote. Last week, House members introduced a , but Republican leaders haven’t scheduled a mark-up. 

Meanwhile, the process of “detailing” education staff to other agencies as part of has accelerated. 

Along with OSERS relocating to HHS this week, several teams from the Office of Civil Rights will move next week to the Department of Justice. That follows the relocation of career and technical education staff to the Department of Labor last year and more than 60 employees from the Office of Elementary and Secondary Education who joined them last month.

In addition, some Education Department offices are moving to other government spaces so the can take over the Lyndon B. Johnson building. Throughout the process, the union representing Education Department employees, has argued that the interagency agreements are illegal and inefficient.

“These moves to new facilities and the interagency agreements only make it harder for federal workers to do their jobs on behalf of the American public,” Rachel Gittleman, president of the American Federation of Government Employees Local 252, said in a statement Tuesday. “This is an insult to the tens of millions of students and families who rely on Education Department services and the taxpayers who count on federal oversight to prevent waste, fraud and abuse.”

Rogers’ resignation came as a surprise to some advocates who want to ensure there is no disruption in services.

“Having the OSERS leader step down during this transition from the Department of Education to HHS adds chaos and uncertainty, raising concerns among educators, families and advocates,” said Chad Rummel, CEO of the Council for Exceptional Children. “Department of Education staff should be focusing on supporting educators, strengthening special education, and improving outcomes for students with disabilities, rather than getting bogged down in reporting structures, internal agreements and unclear priorities.”

The Council of Administrators of Special Education, the professional organization for district special education officials, was also unaware of Rogers’ departure. The group said it “ hopes her successor is appointed quickly and has the experience and deep expertise needed to administer education programs for students with disabilities.”

Unfortunately, our history — and too often our present — shows that many students still do not experience classrooms where educational expertise and civil rights protections work together. 

When a student with a disability is singled out and ridiculed because of disability-related behaviors, or when students with unevaluated disabilities are suspended instead of receiving assessment and support, their rights to educational opportunity are being denied in ways our nation’s laws have long prohibited. Every delay in identifying and correcting these failures deprives students of educational opportunities they cannot recover. 

Students cannot afford confusion about who is responsible for protecting those rights. The Trump administration’s agreement to move responsibility for administering the Individuals with Disabilities Education Act from the U.S. Department of Education to the U.S. Department of Health and Human Services is based on the mistaken assumption that educational rights can simply be transferred between agencies as an operational function. In reality, doing so risks weakening the protections IDEA was designed to guarantee. 

Similarly, the administration’s agreement to transfer civil rights investigations and resolutions away from the Education Department’s Office for Civil Rights to the Department of Justice reflects another significant misconception: that students have time to wait for federal actors to develop the expertise necessary to understand and resolve civil rights concerns in schools quickly, fairly, and in ways that keep students learning. 

Children only get one third grade. One seventh grade. One senior year. Learning is cumulative, and childhood does not pause while governments reorganize. 

A last week to reflect disapproval of some but not all of the responsibility transfers reflected in these interagency agreements.  That vote reflects that these new “agreements” deserve far more attention than a debate over federal bureaucracy. They raise a fundamental question: Do we still understand that students with disabilities are first and foremost students whose right to learn must be protected by both educational expertise and civil rights enforcement? 

For decades, the answer has been yes. 

IDEA, like Brown v. Board of Education and subsequent federal civil rights laws, affirmed that equal educational opportunity is a right. Its most important contribution was recognizing that in schools, disability is fundamentally an educational responsibility requiring skilled instruction, accommodations and schools prepared to help every student learn. 

Helping a child with dyslexia learn to read. Designing instruction that enables a student with autism to participate fully in class. Developing an individualized education program that balances high expectations and meaningful inclusion. These are not intuitive acts. They draw upon decades of scholarship and professional preparation in learning, child development, assessment, curriculum, instructional design, and educational leadership. 

Lawyers protect educational rights. Educators make those rights real. 

For decades, that partnership has shaped our nation’s approach to educational civil rights. Education’s Office for Civil Rights has helped schools understand their obligations, provided technical assistance, resolved complaints without resorting to litigation, monitored compliance and worked to ensure students receive equal educational opportunity. That work requires not only legal expertise but also an understanding of how schools operate, how students learn and how educational systems improve. 

The DOJ plays an essential role through litigation and enforcement, but those responsibilities are fundamentally different from the day-to-day work of helping schools prevent discrimination and resolve problems before students lose years of learning. 

Those functions are complementary, not interchangeable. 

Students learning in school do not experience government through organizational charts. They experience it when a disability evaluation happens on time, or doesn’t; when an accommodation is implemented or postponed; or when a discrimination complaint is resolved before years of instructional time are lost. 

Reasonable people can disagree about the size and organization of the federal government. But educational rights cannot be separated from educational expertise without risking the very outcomes those rights were created to secure. Rights alone do not teach children to read, create inclusive classrooms, or prepare young people for college, careers, and civic life. Skilled educators do. 

And, as this nation learned in and after Brown v. Board of Education, the daily work of ensuring that educators, their administrators and campus counsel understand and apply the legal guarantees of our nation’s civil rights laws is equally essential to ensuring that every student has an equal opportunity to learn free from discrimination. 

We write from different professions. One of us leads a school of education dedicated to improving teaching, learning and the systems that support education. The other, a former assistant secretary of the Office for Civil Rights, leads a law school center committed to strengthening democracy and protecting civil rights. Our work reminds us every day that educational opportunity depends on both educational expertise and legal protections. 

Our nation did not spend half a century moving toward inclusion only to forget the lesson that made that progress possible: educational opportunity is a civil right, and educational rights are strongest when they remain rooted in the institutions whose mission is helping every child learn.

A Senate committee advanced legislation Thursday aimed at undoing the Trump administration’s efforts to split apart the U.S. Department of Education. The bill delivers the plan the biggest rebuke since Education Secretary Linda McMahon began shifting offices to other agencies last year.

The education committee’s would keep oversight of K-12 and services for students with disabilities at the department. It would also keep the Office of Postsecondary Education out of the Department of Labor and the Office of Indian Education from moving to the Department of the Interior.

The legislation leaves “landmark education programs,” like Title I and the Individuals with Disabilities Education Act “at the Department of Education where Congress specifically put them and where they belong,” said Maine Sen. Susan Collins, a Republican, who along with GOP Sen. Lisa Murkowski of Alaska, co-sponsored the bill with Sen. Tim Kaine, a Virginia Democrat. 

Sen. Bill Cassidy, the Louisiana Republican who chairs the committee, voted no on the bill, saying that he’s open to moving some programs, but opposes giving the Department of Health and Human Services responsibility for special education. That move treats “students with disabilities as patients to diagnose rather than learners to educate,” he said, adding that he doubts that any Education Department staff transferred there would be “empowered and prioritized” to do their jobs.

Despite the bipartisan support for leaving much of the department intact, nine members, all Republicans, voted against it. “Many of us have long believed that the federal footprint in education is much larger than it needs to be,” said Republican Sen. Tommy Tuberville of Alabama.

Following the vote, McMahon and six other Trump cabinet members saying there are “misconceptions” about the agreements and they just need more time to prove they’ll work. They have already “demonstrated measurable results by driving stronger grant competitions, streamlining government operations and producing better outcomes for Americans,” they wrote.

Political observers have said since the beginning that the administration’s plan to eliminate the department doesn’t stand a chance of passing the Senate, and Thursday was evidence of that. The legislation, however, still needs to pass the full Senate and is a sharp contrast to the package of 10 bills the House education committee moved earlier this month formalizing the movement of most key programs out of the department. While House Republicans call the arrangements “reform,” the actions have prompted Rep. Suzanne Bonamici to launch an impeachment effort against McMahon. The Oregon Democrat says the agreements are illegal and that the Republicans’ bills are an attempt “to cover for the unlawful actions already taken.” 

Even if the House passes those 10 bills, it’s highly unlikely they would ever get votes in the Senate, said David Cleary, a principal with The Group, a Washington lobbying firm and a former Republican education staffer for the Senate.

The Senate bill, he added, might not go any further either. It’s possible, he said, that Collins and Murkowski could attach it as an amendment to the for defense spending that Republicans are trying to pass through a process known as reconciliation. But even then, it might fail, Cleary said.

During that July 15 markup in the House, Democratic Rep. Bobby Scott of Virginia said that the proposals don’t do anything to fulfill McMahon’s promise to “return education to the states.”

“You’re just moving people around Washington D.C.,” he said.

On Thursday, Democratic Sen. Patty Murray of Washington pressed the department to disclose how much the moves are costing taxpayers.

The Senate bill includes her amendment requiring McMahon to provide Congress with quarterly reports on how much the department is spending to implement the agreements. The department, so far, has spent $1 million to move just one relatively small office running to the Department of Labor, and the administration is asking for an to hire more staff to help with the transition.

“If you’re proud of this deal, show us the price tag,” Murray said. “What do you have to hide?”

Murray also offered separate amendments to reverse all of the agreements, including relocating the Office for Civil Rights to the Department of Justice, but those didn’t pass the committee. Collins said she’s in favor of letting the Justice Department take over education civil rights investigations because she said OCR has failed to address anti-semitism on college campuses.

But Sen. Chris Murphy of Connecticut, a Democrat, said the move won’t improve conditions for Jewish students because the administration has downsized the civil rights workforce. 

“We are at a 12-year low in terms of the number of cases that are being resolved,” he said. DOJ is “just out of the business of trying to investigate serious instances of civil rights abuse.”

Of all the interagency agreements, placing special education within HHS has received the most attention. One advocacy group supports the change, arguing that the shift would offer families more resources when their children transition out of the K-12 system. Out of the , HHS already runs federally funded programs for adults with disabilities.

“Too many students leave school without a clear path to a meaningful career, education or training path,” Rachel Barkley, director of Able Americans, wrote in . 

But overall, have been highly unpopular. Over 700 organizations have signed saying that moving special education to HHS and civil rights to the Department of Justice undermines a “coordinated and cohesive approach” to addressing discrimination complaints. 

Shifting oversight, some advocates say, not only separates special education from OCR, but also from the Office for Elementary and Secondary Education, which McMahon transferred to the Department of Labor.

“These are education programs,” Bonamici said during the July 15 House markup. “K-12 is education; it is not job training.” 

On a recent call with reporters, led by Murray, one parent explained that when her older son was diagnosed with a disability, she immediately wondered if he would ever go to college. Both of Lanya Elsa’s sons have Usher syndrome, a genetic disease that affects hearing and vision.

Conner, now 26, graduated college and works for Alaska Airlines. Dalton, 18, graduated this year with a 4.0 GPA from Bellevue High School in Washington. She attributed their success to the Department of Education’s “specialized expertise.”

“That future was not guaranteed for them,” said Elsa, also a special education researcher and teacher. “It was made possible by families, educators, specialists, 
 federally funded deafblind programs and civil rights protections that believed my sons belonged.”

Released this month, the shows the number of students with disabilities spending much of their days in general education classrooms grew by 25% between 2012 and 2024. The largest growth came in the population spending 80% or more of their school days in inclusive settings, in accordance with a federal civil rights law enacted more than 50 years ago.

But the rigorous monitoring and technical assistance provided by the federal Department of Education’s Office of Special Education and Rehabilitative Services are at risk amid severe staff cuts, reduced state visits and the office’s shift to another agency, say lawmakers who requested the report.

“I’m glad this report was delivered, and was heartened to see a significant increase in the number of students with disabilities being placed in general education classrooms for much of their day,” U.S. Sen. Tim Kaine, a Democrat from Virginia, wrote in an email to Âé¶čŸ«Æ·. “But this report makes plain that progress is not being made equally in all places — and that it would be extremely foolish to move oversight over special education programs out of the Department of Education to other agencies that lack the expertise and experience to close those gaps.”

Sens. Kaine and Bernie Sanders of Vermont requested the report as part of a broader examination of where students with disabilities receive their education. In 2025, Kaine was among a group of senators who U.S. Education Secretary Linda McMahon’s proposal to shift special education out of the Department of Education as a move that will “reverse decades of progress in how we support students with disabilities and their families.”Ìę

On June 16, the move was formalized with . The Department of Health and Human Services did not respond to requests for comment, but in the agreement the agency’s director, Robert F. Kennedy Jr., described the move as a “partnership” that will eliminate bureaucracy, save money and “deliver more effective support for individuals with disabilities and their families.”Ìę

Under the 1975 Individuals with Disabilities Education Act, children with disabilities must be educated alongside their non-disabled peers whenever appropriate. The law aligns with research that shows positive outcomes from inclusive educational practices. A foundational by the National Center on Educational Outcomes found that up to 85% of special education students can meet the same achievement standards as other students if they are given specially designed instruction, access, support and accommodations.

also shows that students with disabilities in inclusive general ed classrooms do better academically and socially, pursue postsecondary education, and are more likely to get a competitive job and live independently.

Disabilities studied in the GAO report include autism, hearing impairment, visual impairments, orthopedic impairments and intellectual impairments among others.

The report shows modest but steady gains in national inclusion rates, but progress was uneven. In 42 states and the District of Columbia the number of students with disabilities spending at least 40% of their time in mainstream classrooms increased, but in North Dakota and Nevada that share of students decreased by about 3%. Inclusion rates also went down in Minnesota, Alabama, Ohio and Georgia over the 12-year period.Ìę

Educators in some states pointed to district staffing shortages to explain why some students with disabilities who require an aide have not joined general education peers. Others noted that a school’s success largely depends on its leadership.

“[School culture] is the No. 1 issue,” a school official told GAO investigators. “The [principal] is the most powerful benefit or hindrance to inclusion. Unfortunately, a lot of principals do not have special education background or depth of knowledge in special ed.”

Advocates worry that moving special education services to HHS will erode a core element of the IDEA.

“It’s a very real separation,” said Jennifer Coco, interim executive director of the New York-based Center for Learner Equity. “What will make inclusion happen is setting an expectation that students with disabilities are students first. We start with the presumption that they’re going to be in the general education classrooms being taught by general ed teachers.” 

Until this year, the federal Office of Special Education and Rehabilitative Services has visited and monitored 10 states a year to ensure that the IDEA is being enforced and to offer support and assistance where it is not. Those state visits are expected to drop to two per year, Coco said, which means less insight into how students are being educated and less support at the state and district levels.

“All of the foundational pieces at the federal level that drive the results we see in this report have been dismantled,” she said. The Department of Education’s staff cuts and decision to move special education services is “pulling the rug out from underneath all of us in terms of how we’re going to sustain the progress that this report shows us.”

Advocates are also concerned that by housing special education services in HHS — whose director drew criticism with his that children with autism “will never pay taxes” — will add stigma for students with disabilities.

“It matters who’s overseeing special education,” said Lisa Mosko Barros, founder of the California-based advocacy organization Speducational. “The tone they set matters.” Kennedy’s remarks about people with autism indicate a “mindset that is concerning,” Barros added. “It’s like enlisting the support of a hospital to oversee a school district.”

Federal teams charged with making sure states are doing right by students with disabilities appear to have visited fewer than half of the states originally scheduled for review in 2025 and 2026.

That information comes from U.S. Department of Education documents compiled and analyzed by the Council of Parent Attorneys and Advocates, a group that supports students with disabilities and their families, as well as additional review by Chalkbeat of publicly available monitoring schedules.

If federal reviews of state special education systems continue at this pace, each state would be reviewed only once every 25 years, COPAA said in a . That would mean many students would go their entire school careers without federal oversight of state systems.

“The new administration has quietly rolled back their state oversight,” said Chris Roe, COPAA director of state policy. “We are worried that this sends a signal to states and eventually to local schools that this is not important, and they don’t need to be concerned about it.”

Drawing on nearly a dozen state monitoring reports based on reviews that started under the Biden administration, the COPAA report also raises concerns about states’ capacity to adequately monitor school districts’ compliance with special education requirements as the Trump administration pledges to “return education to the states.”

The Trump administration has taken steps to dismantle the Education Department by assigning key duties to other federal agencies. Most recently, the department announced that , a change that has drawn and some bipartisan skepticism.

U.S. Sen. Bill Cassidy of Louisiana, a Republican who chairs the Senate education committee, has on that change later this month. By itself, a committee vote won’t reverse the Trump administration’s actions, but a vote against it would represent the strongest formal objection from Congress to date.

COPAA opposes having another government agency handle special education oversight. The group’s report calls on Congress to intervene.

A spokesperson for the Education Department said COPAA’s “entire premise is false,” without describing any specific errors in the findings. The department pointed to — the same ones that COPAA reviewed for its analysis — as evidence the department continues to keep tabs on states.

Citing previous remarks by Education Secretary Linda McMahon, the spokesperson said the partnership between Health and Human Services and Education would improve coordination and benefit families and students, and “ensure states are in compliance with federal law.”

“Students will not lose any rights, including their right to a Free Appropriate Public Education,” the unnamed spokesperson said. “No agreement can alter the rights that students with disabilities are afforded under federal law.”

But Roe said the flaws identified in the monitoring reports show that students and families might struggle more to defend their rights without federal involvement.

Meanwhile, Politico this week to meet their goals for serving students with disabilities.

“When they say let’s return education to the states, there’s an assumption that states will backfill those responsibilities,” Roe said. “The case that that is not going to happen is pretty strong.”

Federal oversight finds gaps in special education protections

The Biden administration had previously urged states to take more responsibility for ensuring school districts meet their special education obligations. But according to monitoring reports, auditors repeatedly found shortcomings.

These included lax fiscal oversight; limited supervision of school district practices; states allowing districts to pick which student files they wanted reviewed; states not investigating parent complaints in a timely manner; and states either not informing parents of their rights or giving them incorrect information.

Roe said this system isn’t perfect. COPAA’s reviews of federal monitoring efforts over the years have found many cases where auditors identified problems, but there was limited follow-up and the problems continued. Nonetheless, the reports provide an important tool for advocates and lawmakers to press for changes, he said.

“Without them, we definitely face more of an uphill battle to getting systems in place to support our students,” Roe said.

The Education Department spokesperson said the department is “on track” to complete monitoring visits to all states by 2028, in keeping with a schedule established in 2022.

However, the spokesperson did not provide a schedule that showed how monitoring teams would visit roughly half the states in the next two years. The identifies only four states, Puerto Rico, and a few Pacific island territories for monitoring during the 2025-26 cycle and none thereafter. One of those states, Georgia, was supposed to be reviewed this spring, but monitoring visits have been pushed back to the fall, the department said.

During the Biden administration, the Education Department set a goal of monitoring 10 states a year, creating a five-year cycle for regular monitoring, in addition to off-cycle visits to address specific issues. COPAA found the Education Department monitored eight states in 2023 and 10 in 2024. A shows the department previously had plans to monitor nine states plus the territories in the 2025-26 cycle, and another 10 the next year.

It’s not clear why states previously identified for monitoring were removed from the schedule. However, the Education Department has laid off large numbers of workers. A published last month raised questions about whether the department could carry out its responsibilities at current staffing levels.

Chalkbeat is a nonprofit news site covering educational change in public schools. This story was originally published by Chalkbeat. Sign up for their newsletters at .

We deeply understand how the U.S. Department of Education protects and supports children with disabilities. Laurie served as the director of the Office of Special Education Programs in the first Trump administration. Stephanie led that office in the George W. Bush administration. We both agree that the federal department is key to ensuring every child deserves a fair chance to get a quality education and the opportunity to reach their full potential.

That is why we oppose moving the office that oversees special education to the U.S. Department of Health and Human Services. We are concerned this step, announced last month, is being driven by a broader push to close the Education Department, rather than by clear evidence that it would improve services for children.

The proposals to dismantle the department are framed as “returning education to the states.”ÌęYet this proposal simply splits federal education responsibilities across multiple agencies, separating expertise that is meant to work together. It risks placing education decisions for children with disabilities in an agency primarily built for health programsÌęand shifting oversight of school-age programs to agencies whose core mission is not K-12 learning.

These changes won’t reduce bureaucracy or empower states. They would add confusion, duplicative processes and hurdles, and inconsistent guidance across agencies. That creates a more fragmented system that is harder for parents, school districts and states to navigate, especially when families are already working to secure timely evaluations, services and coordinated support.

We recognize that the education system is not perfect, and improvement is needed. But meaningful reform must be grounded in facts about how the system actually works and the role the federal government plays within it.Ìę

States and local school districts already control the vast majority of education decisions. The federal department does not set curriculum, determine reading lists, decide how subjects are taught or control teacher certification.

What it does is less visible but critically important. It distributes and oversees federal education funding, provides technical assistance to states and districts and ensures accountability when the rights of students are not upheld.

Breaking up the department will affect all students, families and educators. It also carries an outsized risk for children with disabilities, because services under the Individuals with Disabilities Education Act depend on clear accountability, coordinated implementation and accessible pathways for families when something goes wrong.

More than 8 million students with disabilities (15% of all students) require and currently have the right to special education services. We are talking about children with dyslexia, autism, Down syndrome and other disabilities. These are children who can learn and grow up to become productive members of their communities and taxpayers — if they get the support they need.

They are also kids who, until 50 years ago, were largely excluded from public schools. Most people don’t know that it was federal action, through the enactment of Public Law 94-142 in 1975, that established the right for children with disabilities to attend public schools and receive a free, appropriate public education. That federal role is intrinsic to the success of children with disabilities. It provides essential oversight and technical assistance to states who are not otherwise equipped to implement the law and protect the rights of children with disabilities.

Dismantling the federal role in special education is rolling the dice for children with disabilities. Any breakdown in the system has devastating effects. When learning is delayed, the impact compounds; each missed milestone makes it harder to catch up, creating a ripple effect that can last for years.

For as long as we can remember, special education has had broad support. While we both worked in Republican administrations, we know that families, regardless of party or ideology, want the same thing: a school system that helps every child learn, belong, and succeed. Leaving parents and educators to fend for themselves, without the support they need to navigate a complex system, is not what they are asking for and is not what students need.

This is a moment for parents, families, educators and community members across the political spectrum to pay close attention and speak up. Every person who cares about children has a responsibility to truly understand what is being proposed, ask practical questions about how services and accountability would work, and share your perspective and concerns with state and federal policymakers.

Children need adults to protect consistent support and clear rights. The time to act is not tomorrow. It is today.

Then someone picks up a guitar.

From the first notes, his face transforms, and just like that, he is with us. He sways to the rhythm, eyes alive with an emotion we almost never see in him. In those moments, music gives him something the rest of the world rarely does: the chance to participate and enjoy the moment equally.

I grew up watching this and wondering why. The science, it turns out, is unambiguous. nearly every region of the brain simultaneously. Singing, moving to a beat, even passive listening engages the brain’s centers for emotion, memory and motor function.Ìę

For people with disabilities, this makes music an unusually powerful tool capable of regulating emotions, rewiring neural pathways and opening channels of communication that language cannot reach.

A of intellectually disabled youth in Senegal found that music therapy improved both fine and gross motor skills and reduced social discrimination by fostering inclusion. Healthcare professionals routinely prescribe it for neurological conditions. The evidence is settled. Not uncertain. 

This begs the question of why it is so hard for people with disabilities to access it. And the answer, the honest answer, is that this is a policy failure, not a scientific one. 

are the professionals assigned to work most closely with disabled students, but are trained in behavior management, not in how rhythm and movement support motor development. Music teachers, meanwhile, receive virtually no instruction in adaptive or inclusive techniques. A found a severe lack of resources and training specifically for inclusive music education. In practice, that means music teachers are rarely trained to adapt lessons for students with motor, cognitive, or communication challenges, and paraeducators are not equipped to use music as part of developmental support. 

The result is a cruel paradox: Even when programs exist, the students who stand to gain the most from music are the least likely to receive it.

Fifty years after the Individuals with Disabilities Education Act promised students with disabilities access to a free and appropriate public education, access still depends on local resources, staffing and training. When budgets are stretched, programs like music and the arts can be treated as optional. But for students with disabilities, music is not enrichment. It can be a pathway to confidence, movement, memory and community.Ìę

I saw what that access can look like through in New York City. I first encountered DMF when I performed with the Dalton Chorus at the in 2024. During George Dennehy’s song “The Moment,” I was so focused on his voice that only when the song ended did I fully register that he had been playing the guitar with his feet. What stayed with me was not difference, but sameness: the same joy, nerves, pride and hunger for expression that I feel when I sing.Ìę

DMF is built on the belief that music is a right, not a privilege, and its free online and in-person classes show what that belief looks like in practice. With my family, I later organized Harmony Without Borders, a cross-cultural benefit concert supporting DMF. We brought together Indian and Western music and invited students, teachers, and community members so that more people could see inclusive music not as charity, but as a shared space where everyone can belong equally.

I understood that even more clearly when I volunteered at the DMF in-person classes, sharing Indian and Western solfĂšge and Bollywood dance steps. The response was immediate: Rhythm turned into movement, repetition into confidence, and high-energy music into a room full of attention and connection. Watching that happen made the research feel real. Music engages movement, emotion, memory, and learned patterns all at once. Students with disabilities deserve the same chance to participate in music.

Organizations like DMF have been quietly expanding that access for years. But they were never meant to replace public systems. Their work matters because it shows what is possible. It also shows what is still missing.

This is what brings me back to my uncle. He never received music therapy. He never had adaptive music education. His response to a song is entirely instinctual. I think often about what structured musical support might have unlocked for him or others with cerebral palsy over a lifetime.

That question carries a specific kind of grief, because the support he needed existed. It just never reached him. For my uncle, music is the closest thing he has to a common language with the rest of us. Protecting that connection for my uncle, and making it possible for every student with disabilities in America, requires two things: training teachers to deliver inclusive music education, and defending the funding and oversight that make any of this possible.

When she negotiates with school officials, she often leans on a from the federal government that such “informal removals” — like repeatedly asking a parent to pick up their child early — could violate a student’s rights. 

“They’re denying them access to education,” she said. Parents need that guidance, she added, “because most families can’t afford attorneys and years of litigation.”

That Biden-era document was a of the two offices within the U.S. Department of Education that oversee special education and civil rights and drew attention to that had long gone under the radar. But with Secretary Linda McMahon’s announcement last week that staff in those offices will be sent to separate agencies — special education to the Department of Health and Human Services and the Office for Civil Rights to the Department of Justice — educators and attorneys worry the split will lead to crossed wires for students with disabilities. 

“When school districts have to navigate rules from separate federal departments, it will make it even more challenging to manage a single student’s behavior,” said Jessica Saum, a special education administrator in Arkansas’ Cabot Public Schools, north of Little Rock. Special education programs and civil rights enforcement “are completely intertwined in practice. I do not see how schools and districts can cleanly separate a student’s behavioral needs from their civil rights.”

Sen. Bill Cassidy, the Louisiana Republican who chairs the education committee, has promised to schedule a vote next month to from moving special education to HHS. Parents say they’re concerned that their children’s disabilities would be viewed from a medical perspective. 

“I don’t want my son to be fixed. I want him to be educated,” said Courtney Hansen, a Colorado mom whose son has Down Syndrome. Like Frohling, she was among the hundreds of parents and advocates who joined a with department staff to voice their opinions on the administration’s plans to relocate oversight of special education. A medical model, Hansen said, is “what the disability rights movement has been trying to get away from for the past 50 years.”

But Cassidy, who has been critical of HHS Secretary Robert F. Kennedy Jr., still wouldn’t keep special education and civil rights in the same agency. He thinks the Department of Labor is a better home for special education.  

In addition to the guidance on discipline, the department’s special education officials worked with OCR in 2016 on a clarifying that students with ADHD were eligible for services under the Individuals with Disabilities Education Act or Section 504 of the Rehabilitation Act.

Until then, those students were often “overlooked because they were bright, quiet, passing classes or not creating obvious discipline problems,” said Jon Thomas, a Fairfax, Virginia, counselor who works with students who have ADHD. The condition, he said, “rarely shows up as one clean problem. It’s a kid who’s behind in reading, getting written up for impulsivity, leaning on a parent to hold the homework together, and missing instruction because nobody connected the dots. Split the agencies, and you split that dot-connecting job in half.”

‘Sharper teeth’

The with HHS and DOJ were the latest attempts by the Trump administration to break up and ultimately phase out the Education Department. The DOJ would also handle complaints related to . In her about the move, McMahon said the Office of Special Education and Rehabilitative Services and the Office for Civil Rights will “continue to partner together.” She promised that the move would “break down the bureaucratic barriers and strengthen the coordination of resources.”

Some advocates agree with her. Marilyn Muller, a whose daughter has dyslexia, is “cautiously optimistic” that moving oversight of special education and civil rights out of the Education Department would “finally deliver real accountability,” she . “Too many families have waited years for states and local districts to follow the law.”

The Department of Justice, she wrote, has “sharper teeth.” 

But that’s what some parents and advocates worry about. Relationships with district officials over special education services are already adversarial. In the District of Columbia Public Schools, an OCR investigation recently concluded that parents were often forced to sue to get services for their children. Putting DOJ, the federal government’s primary law enforcement agency, in charge could make the process even less collaborative, Hansen said.

Others say it’s unlikely that the DOJ will make progress on a backlog of OCR complaints when it, too, has experienced . 

“There has already been a dramatic drop in the number of cases OCR is taking and resolving,” particularly disability complaints, said Matt Cohen, a Chicago-based civil rights attorney who specializes in cases involving students with disabilities. “As would be true when any organization is uncoupled, collaboration, coordination and consistency will be far more difficult.”  

Among the complaints OCR is acting on, officials that it’s investigating the New Home Independent School District in Texas, south of Lubbock, for canceling a life skills class for students with disabilities. In May, it opened an investigation into the for its plans to move some services for students with disabilities to a central location this fall rather than keep them in general education classrooms. 

OCR also spent a year probing the D.C. Public Schools’ special education system, but a from the Government Accountability Office, a watchdog agency, found that OCR dismissed 90% of the 7,000 cases it says it resolved between March and September last year.

OCR’s most shows it received 22,687 complaints in fiscal year 2024, with more than 8,400 focusing on disabilities. But the public has no way to know how many complaints OCR, under McMahon’s leadership, is currently investigating because the website with that information since the Trump administration took office. 

‘Change does need to happen’

Even before staff departures, the DOJ’s civil rights division “traditionally handled a much lower volume of cases,” said Johnathan Smith, managing director of education and federal strategic advocacy at the National Center for Youth Law. He previously served as a deputy assistant attorney in that division. “It is not clear that there is the infrastructure to meaningfully handle such a high volume of complaints.”

Rob Harris, a Colorado father filed several complaints with OCR during the first Trump and Biden administrations, because his daughter, who is blind, wasn’t receiving services written into her individualized education program, like a cane and materials in Braille. But OCR never took any action.

He told Âé¶čŸ«Æ· that he “ended up bailing the school system” and now homeschools his children, while also serving as a “facilitator” in meetings between parents and educators to develop students’ special education plans, especially those related to job coaching and transition plans after high school.

“I really want to make sure that students receive the services that they’re entitled to,” he said. 

That’s what he when he gave his three-minute statement on the January call with parents and advocates. Like several parents and advocates who participated, he said no one voiced support for moving oversight of special education to HHS. 

“It might not be the change that we wanted,” he said, “but change does need to happen.”

Federal officials Tuesday that the Office of Special Education and Rehabilitative Services will move to the Department of Health and Human Services, while the Office for Civil Rights will shift to the Department of Justice. It’s a decision that’s been in the making for more than a year, as the administration has attempted to dismantle the Education Department .

At a press conference Tuesday, senior department officials as new partnerships between the agencies. The officials said the changes won’t impact or reduce students’ rights, but instead improve efficiency. Senior department officials participated in the briefing on the condition that the speakers wouldn’t be identified by name. Education Secretary Linda McMahon did not take part.

Both the Office of Special Education and Rehabilitative Services and the Office for Civil Rights will retain some original functions, according to federal . But many specifics, such as staffing decisions and timelines, are still under discussion, the officials said. 

Special education advocates have protested that moving programs, including civil rights oversight, out of the Education Department will harm students with disabilities. 

In a  Tuesday, McMahon acknowledged that too many families must still fight for timely and appropriate special education services for their children. She said the changes will “break down bureaucratic barriers and strengthen the coordination of resources to improve programs.”

“It should not require herculean effort to obtain what the law guarantees,” McMahon said. “As the Trump administration scales back federal micromanagement when it hinders success, we are equally committed to bolstering the efficacy of federal oversight where it is essential.”

The Office of Special Education and Rehabilitative Services oversees the Individuals with Disabilities Education Act, a landmark set of statutes that guarantee more than 8 million children with disabilities the right to attend public school. Critics say moving responsibility to HHS means taking oversight away from experts in specialized instruction and handing it to an agency ill-equipped to administer non-medical programs.

“Moving IDEA oversight into HHS pushes students with disabilities toward a medical model, where disability is treated as a diagnosis to manage instead of a natural part of human life,” Robyn Linscott, a director at The Arc of the United States, said in a Tuesday press release. “When that mindset drives education decisions, students are more likely to be segregated, underestimated or treated as separate from the school community.”

The Education Department the special ed office already overlaps with HHS programs for people with disabilities.

The Office for Civil Rights has been a key avenue of relief for parents unable to get services for their children through complaints filed with their state, mediation, administrative hearings or due process cases. Families in states lacking local enforcement of special education complaints depend on OCR to investigate discrimination.

McMahon said in her statement that the partnership between OCR and the Justice Department will provide more responsive and coordinated enforcement of civil rights laws.

“OCR and DOJ will combine their expertise and capacity to bolster evaluation, investigation, resolution of complaints and, above all, enforce critical protections for all students,” she said.

Senior education department officials said during Tuesday’s press conference that OCR will refer complaints to the Justice Department for evaluation, investigation and resolution. The agency will still be in charge of case settlements, civil rights data collection and state assistance, and will make final determinations on whether to pursue action by referring cases to the Justice Department for enforcement.

Though McMahon said the moves will improve student and family outcomes, The American Federation of Government Employees Local 252, which represents 2,000 Education Department staffers, said the shift is breaking down government processes instead of streamlining them. 

“This isn’t efficiency — it’s chaos. Previous interagency agreements divvying up both P-12 and higher education programs to other federal agencies have led to massive delays in congressionally mandated funding and confusion for federal employees and the public alike,” union President Rachel Gittleman said in an emailed statement. “That’s an insult to the millions of students and families who rely on these services and the taxpayers who count on federal oversight to prevent waste, fraud and abuse.” 

The Trump administration is using interagency agreements to circumvent to close the Education Department, a move that House members have warned would “create inefficiencies” and “cause delays and administrative challenges.” When the Department of Labor picked up career and technical education last year, for example, some states had to wait months to access millions of dollars in funding.

When Tania Rivera’s son with autism ran out of school and into the street, no one noticed he was gone. Not the teacher or any school official. Rivera said she found out from another parent who saw him. 

“It wasn’t safe for him, and I was in shock. Believe me, because he was in danger,” Rivera said. She didn’t know whether her son had hopped in a stranger’s car or gotten lost.

Although that incident happened more than a decade ago, Rivera’s experience reflects broader concerns across Los Angeles County, where a new parent-led survey finds that many families say their children with disabilities feel unsafe and unsupported at school. 

The survey, published by , a parent-led advocacy organization focused on special education, includes responses from 342 families across nearly 40 school districts in Los Angeles County, including more than 150 with children in the Los Angeles Unified School District. 

Fewer than half the families — 45% — said their child in special education often or always feels safe at school. Another 41% said they are dissatisfied with the services their child receives. 

“I am sorry to say that the data is sobering. It’s lifted up a lot of concerns. It’s documented a lot of issues, a lot of structural issues in special education,” said Lisa Mosko Barros, the founder of SpEducational. 

She said the findings didn’t surprise her, noting that many of the issues reflected in the survey are ones families have long experienced and shared over the years, including in her own family. 

Accessing an IEP 

For many parents like Mark Mockett, whose son is in 12th grade, the journey to secure and maintain accommodations has been an ongoing, uphill battle. 

“We had to advocate for him and advocate for ourselves for the whole journey,” said Mockett, whose son has autism. “We had to push to get evaluated; push to get every accommodation we needed; push to get him the placement that we wanted.”

Securing an Individualized Education Plan, or IEP, is often a difficult and frustrating process for families. The survey found that only a quarter of respondents received the information they needed before an IEP meeting. In LAUSD, 24% of respondents had to wait more than a year for an evaluation, and Spanish speakers were twice as likely to experience that delay. LAUSD did not respond by EdSource’s deadline. 

“We’ve had to almost reinvent the wheel all the time,” Mockett said.  

The challenges are even greater for some families. Spanish-speaking households were four times less likely to receive materials, and low-income families were four times less likely to feel included in the planning process. 

Fear of immigration enforcement can make it even harder for families to advocate for their children, Barros added.  

In school 

Even when an IEP is in place, families say implementation can be inconsistent. One parent, who asked to remain anonymous for fear of retaliation, said she constantly worried whether her daughter’s plan was being followed.  

“Just because you have an IEP, it doesn’t mean it is being enforced,” she said. Her daughter, who has ataxia, a condition that involves poor muscle control, has sometimes needed increased support over the years. “There was always a worry of her being unable to enter or exit a room, including restrooms.”

At one school assembly, she said, her daughter collapsed.  

Concerns about safety are widespread. In the survey, only 45% of families said their child “often or always feels safe” at school. Spanish-speaking families were also three times more likely to report that their child “never, or rarely, felt safe.”

Confidence in services is also low. More than half of LAUSD respondents said they were “not very” or “not at all” confident that their child was receiving appropriate support. Countywide, 41% of families reported dissatisfaction with the services provided to their child, and only 11% said their child received a legally required evaluation within 60 days.  

“I wish I could say [having a mobility device and aide] was a magic fix,” the parent said. “Unfortunately, it wasn’t. We have continued to run into issues with the district providing the support that she is supposed to be receiving.” 

For years, her daughter had always seen herself as “the other,” “the kid with the walker, the kid with the disability.” But after transferring schools multiple times, this year has finally been different.   

“This is the first year being a mom of this child that I’ve ever been able to drop her off at school and feel confident that she is safe and comfortable,” the parent said. “And for that to have taken 10 years is mind-blowing.” 

Broader impact 

Although more than 80% of students with disabilities can achieve grade-level standards with proper support, Mockett said his son was steered away from a diploma and toward a certificate of completion. 

But because of ongoing advocacy, he will graduate this spring and hopes to study filmmaking in college. 

“The thing I’ve learned more than anything else 
 is learning to see the world through his eyes,” Mockett said. “I think that’s been the most interesting part of the journey and trying to understand how he views the world.” 

But constantly pushing for support can take a toll — not just for the children, but their families. In the survey, 68% of families said advocating for their child has contributed to anxiety or depression. Nearly 40% experienced disruptions in their employment. 

Barros said districts should work more closely with families and conduct their own surveys to better understand and respond to student needs. 

It would “just move the needle so fast and far, because they would be actually collecting the data themselves, and reflecting back to the community what is actually happening,” Barros said. “That way, with that data, they can move forward in a very informed and concrete way.”

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While intended as a universal benefit, educational support for disabled children is significantly segregated by class, according to a paper released in January. The decade-spanning analysis of state and federal data found that wealthy families were twice as likely as poorer ones to be granted accommodations under the federal law .

A similar split was present in the vast architecture of special education offered through Individualized Education Programs — though in that case, the dynamic was reversed, with IEP recipients much more likely to come from low-income families than well-off ones.

Nick Ainsworth, a doctoral student at the University of California, Irvine, and lead author, said his interest in the topic was stoked during the COVID era, when evaluations for special education fell dramatically in schools around the country. While studying trends leading up to the pandemic, however, he and his colleagues noticed how differently rich and poor households access the federal government’s two biggest sources of disability services.

“We looked across the income distribution and started to see these large differences,” Ainsworth said. “We had some hypotheses about what that would look like with respect to 504 plans, but we did not expect to see those differences favoring high-income students.”

Those findings may have come as a surprise to the research team, but they validate long-held suspicions among education observers that 504-mandated aid — considered less comprehensive than those provided by IEPs, but subject to fewer legal requirements — are directed disproportionately toward the affluent. 

In 2019, a pair of investigations by and revealed that school districts with higher average incomes enrolled conspicuously larger numbers of students with 504 plans. Eligible pupils are typically given extra time to complete assignments and tests, raising concerns that some parents exploited the program to gain unneeded academic perks for their kids.

Such cynicism is perhaps inevitable amid the furious competition waged for top scores and coveted admissions slots. And the jostling for position doesn’t even relent with the arrival of college acceptance letters: at America’s most prestigious universities now say they experience conditions like anxiety and ADHD, which can confer special accommodations. But experts say it is unclear whether the system is being gamed, or if its design simply leaves needier children underserved. 

Ainsworth and his colleagues created the study by gathering academic records for millions of Oregon students between the 2008–09 and 2018–19 school years, then over the same period. The combined data allowed them to see not only which students were classified as needing IEP vs. 504 services, but which specific disability they reported.

In all, one-quarter of the most disadvantaged students had an IEP, a portion more than three times greater than that of the very wealthiest students. Meanwhile, nearly twice as many students from families near the top of the income scale were assigned a 504 plan than those near the bottom (2.9 percent vs. 1.5 percent).

Paul Morgan, a professor at the University of Albany whose work focuses on disability classification, said those patterns reflected important distinctions in how the two offerings are used. 

IEPs provide specialized instruction geared toward each student’s learning goals, sometimes including placement outside general education classrooms. By contrast, 504 plans only require schools to make the requisite modification to give students equal access to learning opportunities. Their looser eligibility standards may allow parents with the resources and wherewithal to access support on behalf of children who aren’t obvious candidates for IEPs, Morgan remarked.

“These are benefits that don’t come with a lot of costs. Your child is typically not leaving the classroom,” he said. “They might be seen as beneficial without much downside in terms of tradeoffs.”

The laws’ tradeoffs

To a large degree, the tradeoffs families face when choosing between an IEP and a 504 plan are shaped by the laws governing each policy. Differences in those statutes mean that many don’t perceive a choice at all. 

IEPs were created by the 1975 Individuals with Disabilities in Education Act, which lists — from deaf-blindness to traumatic brain injury — that make children eligible for special education. Congress disburses annual grants to states ( in FY 2025) that pay for the provisions included in each student’s IEP. 

The calculation is different with 504 plans, which are not attached to any federal funding. Under the eponymous Section 504 of the , the plans establish students’ rights to reasonable accommodations for a much broader array of conditions. Yet in the absence of a federal subsidy, the assistance provided usually takes the form of cost-free interventions like extra testing time, preferential classroom seating, and even reduced homework burdens.

Schools are to find and evaluate children who may be disabled, but in practice, many are never referred for services. Christopher Cleveland, an assistant professor of education at Brown University and one of Ainsworth’s coauthors, said the incentives for schools to initiate the 504 process are “probably less clear.”

“Many school leaders feel that they’re in a high-pressure situation to figure out the resources of special education versus local, in-state dollars,” Cleveland added. “Whereas the 504 plan decisions seem like they’re more subject to advocacy on the part of families.”

The parents best equipped to wrangle the needed paperwork and prod school staffers toward a resolution are those with sufficient time, mental bandwidth, and experience dealing with bureaucracies. Since the outcome of 504 evaluations can hinge on diagnoses for disorders like social anxiety or attention deficit, it also helps to be able to afford the kind of expensive neuropsychological evaluations that insurance doesn’t always cover.

Miriam Nunberg is a former attorney for the Department of Education’s Office of Civil Rights who now works as in New York City. She said parents are obliged to be proactive in seeking accommodations, especially for high achievers whose performance at school tends to conceal learning difficulties. For guidance, they can turn to a cottage industry of lawyers, professional advocates, tutors, and clinical evaluators.

While each of them bill at healthy rates, the expense could be unavoidable in New York. As in many other jurisdictions, disability evaluations conducted through the school district have in the past due to staffing shortages.

“When kids are pulling As and Bs, school staff generally aren’t referring them to assessments, whether for 504s or IEPs,” Nunberg said. “So it really has to come from the family — and that’s where you need to have the ability to educate yourself, or hire someone to help you with it.”

Help on the SAT

Still, the mere fact that financially comfortable families are well positioned to hire that help doesn’t reveal anything about their motives. 

Ben Lovett, a professor of psychology and education at Columbia University’s Teachers College, said he thought the “valuable” study’s finding that poorer students are likelier to be assigned IEPs was plausible because poverty and disability . On the other hand, he wrote in an email, the overrepresentation of 504s at the high end of the income scale was “harder to understand.”

Some combination of three factors had to explain what was going on, Lovett continued: Either moneyed parents are pushing schools to issue 504 plans that are not educationally necessary; their children are particularly susceptible to conditions, such as mood or anxiety disorders, that aren’t usually addressed through special education; or the families of the neediest learners are more challenged than others in navigating the system. 

“Only additional research that audits 504 plans and investigates the evidence of disability for each student can really determine the degree to which these three factors explain the disparities,” he wrote.

One suggestive detail is that the socioeconomic divide estimated in Ainsworth’s paper actually grew slightly as students entered middle and high school, when academic demands escalate. The lure of extra time on college exams could be a powerful inducement to grab any available edge.

A , published in March by Princeton doctoral candidate Tiffany Liu, discovered a measurable uptick in 504 plan enrollments in 2017 after the College Board began a policy of automatically honoring test takers’ school-based accommodations when they took the SAT. The increase was sharpest in wealthier schools.

Nunberg agreed that the elevated academic stakes of high school likely motivated some parents to have their sons and daughters evaluated for disabilities — especially after seeing them underperform on, or become anxious about, tests like the PSAT. But while conceding that some parents in New York always search for unwarranted advantages, she argued that it was more common to encounter intelligent kids juggling real problems of focus and executive function.

“What I see much more often are kids who are brilliant and have a lot of pressure put on them by their parents, or themselves, or the system at large, and who are literally staying up all night to achieve high grades,” she lamented.

The University of Albany’s Morgan said he believed there was substantial unmet need for disability services in K–12 schools. What’s more, he concluded, it was “not unreasonable” to think that people would use the methods at their disposal to push their offspring to the top of the pile.

“I imagine there is abuse or manipulation of the system, including by parents who view it as a way for their child to get additional support. Especially for some selective colleges, things have gotten so extremely cutthroat that you’d want to give your kid any benefit you could.”

Correction: An earlier version of this story contained a photo caption that misidentified the Individuals with Disabilities in Education Act.Ìę

For Dave Murman, the issue was personal.

The Republican state lawmaker knew Nebraska school districts were denying transfer requests at high rates to students with disabilities — kids who reminded Murman of his now-grown daughter. 

In 2025, he proposed a bill to ban the disproportionate rejections.

Gov. Jim Pillen , but by then, it was unrecognizable to the parents and disability advocates who had once backed it.

Murman, facing opposition from schools and the state teachers union, stripped most of the protections for students with disabilities out of the proposal earlier this year. The new focus of the legislation: allowing schools to suspend their youngest students.

Angela Gleason, whose son Teddy has been denied transfers several times, said it feels like one step forward and two steps back. 

“I was like, ‘Oh, it was going to help kids, and now I feel like it’s hurting more kids than it was going to help,’ ” Gleason said.

Nebraska’s option enrollment policy allows students to transfer from one public school district to another, but in practice, kids with disabilities don’t have the same freedom to transfer as their peers, by the Flatwater Free Press and Âé¶čŸ«Æ· found.

That trend continued during the 2024-25 school year, according to the latest state report. Nebraska districts denied 35% of option applications from students with individualized education programs, compared with about 9% of applications from students without them, a new Flatwater analysis found.

The rejection rates are especially disproportionate in the Omaha suburbs.

Bellevue Public Schools turned away more than three-quarters of students with IEPs but accepted all but one of the 246 applicants without disabilities. Three other suburban districts each denied well over half of the kids with IEPs who applied while accepting a majority of kids without IEPs.

Murman’s original bill would have outlawed that. But school administrators and opposed the legislation, contending that districts with dire special ed teaching shortages shouldn’t be forced to take on more kids with IEPs.

Murman knew he didn’t have enough votes from lawmakers willing to buck their local superintendents. So earlier this year, he altered the focus of the legislation.

The amended bill aimed to restore schools’ ability to suspend students in pre-K through second grade for violent behavior, reversing on the practice.

One option enrollment provision remained: Districts had to guarantee seats for siblings of students who had already optioned in.

After on school suspensions, Republican lawmakers passed the bill over objections from Democrats.

The siblings clause will provide an avenue for at least some students with disabilities to get into districts that might otherwise deny them, Murman said. 

State Sen. Danielle Conrad, a Lincoln Democrat, said Murman had hijacked a well-intentioned bill to push Pillen’s priority of removing protections for young students facing punishment.  

“If the schools, the governor and the Legislature won’t act to remedy this clear discrimination on a systemic level, I hope parents start suing the schools to hold them accountable,” Conrad wrote in an email to Flatwater Free Press.

Gleason said it’s disappointing that the bill she thought would help kids like her son Teddy transfer schools will result in more of them being suspended. 

In first grade, Omaha Public Schools placed Teddy, who has autism, in a general education classroom where he struggled behaviorally, she said. The school called almost daily asking her to pick him up early, she recalled. 

“He basically had a lot of informal suspensions where they would call me and ask me to come get him,” Gleason said. “Then he’s just missing out on the education, and so it just snowballed.”

Across the state, students enrolled in special education were suspended more than twice as often as their peers last school year, . The Arc of Nebraska, a leading disability advocacy organization, opposed Murman’s bill because of that disciplinary disparity. 

Gleason’s other children are option students at a nearby suburban district, so Teddy could potentially join them under the new law. It’s still upsetting that the opportunity to transfer doesn’t extend to all other children with IEPs, she said.

For the Shada family, the bill comes years too late to make a difference. 

Gary Shada, a longtime teacher at Pierce Public Schools in northeast Nebraska, applied years ago for his daughter Kylee to join the district as an option student, but his employer turned her away. His son was granted a transfer.

Instead, Kylee, who has Down syndrome, has been enrolled at the nearby Plainview district. But with Shada nearing retirement and his son due to graduate next year, he said he doesn’t see the point in bringing Kylee into the district anymore. Still, he said he wishes Murman’s bill had been in effect when the family first applied for option enrollment.

“I think sometimes public schools forget what their reason for existing is,” Shada said. “It’s not about being able to pick and choose who walks who walks through your front door.”

Bellevue Public Schools is short six special ed teachers and about 15 paraprofessionals, and adding more option students with IEPs to “already difficult caseloads is not what is best for teachers or students,” said district spokeswoman Amanda Oliver.

“Our decisions are not based on a student’s disability, but on our ability to provide the services required by their IEP in a manner that meets both educational standards and legal obligations,” Oliver wrote in an email. 

Grand Island Public Schools, which denied all five of the students with IEPs who applied last school year, is similarly understaffed in special ed and is close to enrollment capacity just with neighborhood students, Superintendent Matt Fisher said in a statement.

“Legally and functionally, we have not been able to accommodate some of the needs of those requesting to enter the district through the option process,” Fisher said.

Staff at the Nebraska Department of Education are considering option enrollment rule changes tied to the original and amended versions of Murman’s bill, but it’s not clear what they will look like.  

Murman said the disproportionate rejection of kids with disabilities is “pure discrimination.” Term limits prevent him from running for reelection this year, but he hopes another state lawmaker will take up the cause after he’s gone.

Gleason said she appreciated Murman’s intentions, but she’s not hopeful the Legislature will resolve the issue soon, especially given schools’ opposition.

This year, the Legislature also that would have required schools to get parents’ approval before changing a student’s IEP. Proponents said the legislation would have given families a way to fight schools’ attempts to cut special education services. 

Mary Phillips, president of the Arc of Nebraska, takes the long view on advocating for the rights of children with disabilities. It wasn’t until 1975 that a law ensured they could attend their neighborhood schools. 

“I feel like progress comes very slow for the disability culture,” Phillips said. “The work isn’t done.”

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That moment carried more than joy. It carried years of waiting lists, missed explanations, language barriers and advocacy in systems that were never designed with her family in mind.

Sofía’s story is not unique. Across the country, Latino families navigating special education often encounter structural barriers that make access more complicated than federal law intends. Under the Individuals with Disabilities Education Act, schools are required to provide timely evaluations and ensure meaningful parent participation. Yet the lived experiences of many multilingual families suggest that implementation is uneven.

In 2022, launched , a community-based research initiative that trains Latino parents to document and analyze the realities facing families like their own. Parents are not research subjects in this model; they are the researchers. Two years later, ISLA — working within its parent-led research model, Padres Investigadores, and supported by research consultants — trained a new team of Latino parent researchers to design and conduct a statewide study examining how families in North Carolina navigate special education.

highlight important gaps in communication and access.

For many Latino families, entering special education means navigating two unfamiliar systems at once: disability services and English. Parents in our study described four stages in their journey: recognizing developmental differences, securing evaluations and diagnoses, accessing services and navigating schools, and managing communication challenges that created delays, confusion and stress.

More than half of parents were the first to notice developmental concerns in their children, not teachers or doctors. Yet many said those concerns were initially dismissed. While IDEA establishes timelines for evaluations, over 40% of families in our study reported waiting six months or longer. Nearly half identified language as their biggest barrier to accessing quality services.

In early childhood, time matters. Delays in evaluation and intervention can shape long-term educational trajectories. When families do not fully understand what services exist, what documents they are signing or what rights they hold, special education becomes harder to access equitably.

Language access is not simply a courtesy; it is essential for meaningful participation. Families described inconsistent interpretation, incomplete translations and meetings that moved forward without ensuring comprehension. One father told us, “They talked about my child’s future in a language I couldn’t speak.”

Importantly, families were not disengaged. They attended meetings. They asked questions. They took notes. What they sought was clarity and partnership.

The parents in our study consistently named three priorities: clear multilingual information, culturally responsive communication and timely access to evaluations and services with reliable interpretation. These requests align closely with on effective special education practices.

One of the most powerful findings from this work is that when parents are included as partners in research and problem-solving, trust grows. Padres Investigadores shifts the dynamic from extraction to collaboration. Parents design questions, gather stories and interpret findings within their own communities. In doing so, they reveal insights that might otherwise remain invisible.

Natalia, who once felt overwhelmed when she heard the word “autism” connected to her son, is now one of those parent researchers. She supports other Spanish-speaking families navigating the same systems she once struggled to understand. Her leadership did not emerge from policy alone; it emerged from access to information and genuine inclusion.

Sofía’s first word through a device represents possibility. But possibility should not depend on a family’s fluency in English or familiarity with educational terminology.

Equity in special education is not only about compliance. It is about ensuring that families understand the process, feel respected in it and are able to participate meaningfully in decisions affecting their children.

When language access, cultural understanding and parent partnership are treated as foundational, not supplemental, special education systems move closer to fulfilling the promise embedded in federal law.

Listening to families like Sofía’s is not an act of charity. It is a necessary step toward building systems that work as intended — for every child.

New of these schools, shared exclusively with Âé¶čŸ«Æ·, was published Thursday by Education Reimagined, a national nonprofit that helps schools implement . It’s an approach where young people have ownership of their education, learn in their communities and show their knowledge through multiple ways, not just tests, according to the nonprofit. 

Over the 2024-25 school year, Education Reimagined studied in St. Paul, Minnesota; in LaFayette, New York; and in Mukwonago, Wisconsin —  a mix of urban, suburban and rural communities that enrolled a total of 388 K-12 students. More than 45% had individualized education programs or 504 plans — documents that spell out how needs will be met under the Americans with Disabilities Act. 

“In all the sites we studied, the systems are designed to fit the learner and their needs, not the other way around,” said Khara Schonfeld, one of the organization’s researchers. “They’re seeing differences as the norm as opposed to the exception. That means learners are showing up.”

That included mindsets that shifted how staff understood learning differences and student potential; different organizational structures; and key daily practices for student support and success.

The approach has produced positive academic results. At Norris School District, students with IEPs increase reading performance by an average of 8 percentage points and math by 4 percentage points per trimester. Avalon students with IEPs consistently for students with IEPs on math and reading tests. 

In the LaFayette Central School District, the opening of LaFayette Big Picture in 2008 correlated with graduation rates for students with IEPs in the district rising from a range of 50% to 70% to a scale of 95% to 100%.

Students who enrolled in these schools also experienced a decline in behavioral incidents and became more engaged in their education, according to the research.

“A lot of the learners came with past trauma, including education trauma — they had a hard time in previous schools,” she said. “So it all really focused on this idea of healing and making sure that they felt safe and cared for. We had a couple of alumni say, ‘I went to the school. I can talk to anyone about anything that I want to get or find out because the school taught me how to do that.”

Schonfeld said common accommodations students with disabilities need in traditional classroom settings are provided to everyone — a key factor in the learner-centered system’s success.

In Minnesota’s Avalon School, staff begin each day with a session where students and their advisors connect in a sensory-friendly setting  — an environment that reduces stimuli like harsh lighting and loud noises. Norris School District’s single campus, where 75% of the students have IEPs, celebrates small accomplishments that might go unnoticed, such as a student’s ability to hold an entire conversation, the case study said.

Leadership structures are also different at these schools. Avalon, a charter school, has a teacher-majority board that allows educators to redesign schedules and positions. LaFayette Big Picture School pairs students with mentors, while Norris School District has staff meetings every day.

Some daily practices include offering internships onsite to ensure students don’t have to be “ready” to travel outside the building to experience career education. The schools also interpret disruptive behavior as communication about unmet needs rather than misconduct, according to the research. For example, Avalon School uses a strategy called relational repair, where educators ask reflective questions after a disruptive behavior to build trust with students. At Norris, students are taught to name feelings to help staff find the right support during a behavioral incident.

This learner-centered framework has a positive ripple effect with families and educators, Schonfeld said. Parents of students at all three schools have shared they no longer have to fight for their child’s special education accommodations. 

Teachers also feel more supported and satisfied with their jobs, the researchers found. Avalon School has maintained a 90% year-to-year retention rate over two decades, with current teachers averaging 10 years of experience. At LaFayette, more than half of the staff have been at the school for at least nine years.

After a , the department’s Office for Civil Rights said the district must create a new division focusing on students with disabilities, improve transportation services for those students, and take steps to better identify and accommodate their needs.

“The district must take immediate action to remedy their violations and protect the rights of current and future students to a free and appropriate public education,” Assistant Secretary for Civil Rights Kimberly Richey said in a statement. 

The proposed resolution agreement also requires the district to train staff, including bus drivers, on any updated policies. If officials don’t agree to the terms, OCR “may initiate enforcement,” the announcement said. 

The district, which said from the outset that it would cooperate with the department, is “carefully reviewing” the findings, a spokesman said, adding that OCR makes important points about providing clear information to parents and getting their children to and from school. 

Neither the department nor the district, however, has made the full results of the investigation available.

With OCR largely focusing its resources on investigating districts that allow students to compete in sports or use bathrooms based on gender identity, the D.C. investigation is one of the few disability-related cases it has launched and completed since President Donald Trump returned to office. A from the U.S. Commission on Civil Rights, which sparked the probe, found that the district has one of highest rates of special education complaints in the nation. An advisory committee to the commission determined that young children in the district were under-identified for special education services or accommodations for disabilities and that parents were often encouraged to file lawsuits in order to get their children help. 

“That obviously favors those who have means, can hire an attorney and know how to get through the system,” said Craig Leen, former vice chair of the advisory committee. A civil rights attorney who served in the Labor Department during Trump’s first term, he also struggled to get services for his daughter. Now a senior at a charter school in the district, she has autism and an intellectual disability.

The bus was often late or didn’t arrive at all, creating disruptions to his daughter’s routine, Leen said. Since the investigation began, he said he’s seen improvements. The bus comes on time, and to keep parents updated, the Office of the State Superintendent of Education, which oversees transportation for students with disabilities in both DCPS and charter schools in the city, is developing a bus .

The district, according to the spokesman, is working with the state agency to “improve real‑time visibility into bus delays to make certain students do not lose instructional time or access to required services.”

Leen said he’s not concerned about Education Secretary Linda McMahon’s plans to transfer OCR or the Office of Special Education and Rehabilitative Services to another federal agency as she continues efforts to phase out the department. 

“My main concern is that they have a designated agency addressing special education,” he said. 

Many of the advisory committee’s recommendations were based on testimony from Maria Blaeuer, director of programs and outreach with Advocates for Justice and Education, Inc., The organization trains parents and provides to families who haven’t been able to get services for their children.

The organization is “thankful that OCR is paying attention to the many challenges that students with disabilities in the District of Columbia are facing,” Blaeuer said. But she added that it would be premature to comment on the department’s announcement “without access to the actual determination” or until a resolution has been reached.

Imagine knowing exactly what you want to say, but the words don’t make it from your brain to your lips. You know how you want to move, but your body fails to comply. You’re thirsty, but your hand refuses to reach for your cup. You see the traffic but can’t stop your feet. 

It’s what I refer to as a brain-body disconnect. My brain knows what I want to do, say or stop doing, but my body doesn’t usually comply.

This is the reality of millions of people living with autism who have unreliable or minimal speaking skills or can’t speak at all. This is the reality of living with something called full-body apraxia, a term I hadn’t heard until recently, despite my 30 years of being diagnosed with this and or that disorder. But apraxia perfectly sums up my lifelong struggles.

Apraxia is a neurological condition that affects an individual’s ability to plan and carry out intentional movements, even though the physical ability and desire to complete the action are present. It’s a disorder that can very easily deceive onlookers into believing the individual lacks an understanding of the most basic concepts of danger or human emotion, or that they fail to comprehend the simplest instructions â€” or are choosing not to comply. 

Most well-meaning autism professionals are creating and implementing therapies based on these inaccurate and dangerous assumptions: the assumption that their student’s inability to complete their assigned tasks are due to either a behavioral or cognitive impairment. This is despite the fact that many of us have the correct diagnosis of motor planning and/or sensory processing disorder. Many treatment providers fail to recognize how these motor and sensory differences might manifest when implementing hours of behavior training or when assessing our cognitive abilities. 

These dangerous assumptions lead to children with autism enduring hours of dehumanizing and at times abusive therapies. And these assumptions rob us of our right to receive an adequate education and limit our access to and acceptance of alternative therapies. 

We are burdened with the impossible task of proving our intelligence with bodies that are not fully connected to the intentions and instructions of our brains, with bodies that not only fail to move how we want, but in many cases, take over and do what they want. Often instead of what I intend, my body will say what it wants, point where it wants and complete loops that I have little to no control over. 

Because educators and treatment providers fail to understand this, our basic human rights are withheld until we are able to prove our intelligence, emotional awareness and worth. We are often not treated with dignity until we can prove that our outward appearances and actions are not a true reflection of our minds and hearts.

I was a victim of those dangerous assumptions for 30 long years. Educators and doctors repeatedly told my parents that I had the intelligence of a 4-year old, and I was relegated to living out my days in a windowless warehouse called a day program. These are programs designed to house those who society believes don’t know, understand or feel enough to recognize the inhumanity of the system in which they exist. 

This system holds overwhelmed families hostage, forcing them into accepting only their approved options. The experts running these systems are blind to our needs, and often dismiss parent questions and concerns, treating them as if they are unfamiliar with their own children.

That was my life, a lesson in patience and surrender. I was resigned to accept my bleak and uncertain future until my family learned about . This is a motor-based communication method that understood that my inability to communicate was due to a motor challenge rather than a cognitive one. 

It’s a therapy designed to support my regulation and my body movement, and has taught me how to override my body’s automatic actions and create new ones. It taught me how to coordinate my eyes with my hand in order to accurately point to letters on a letterboard to spell my thoughts. It’s a therapy that, within a year, had changed my life beyond recognition. It was no easy task. 

If my family would have taken my behavior as communication, which is common when you have nothing else to rely on, we wouldn’t have made it past the first few sessions. My body rebelled. The prospect of finally being able to communicate overwhelmed my system with excitement. I spent the first several months screaming and shaking uncontrollably, but with the skilled guidance and quiet determination of my practitioner, I slowly progressed from one large letter to all 26, from answering questions with only one possible response to spelling out my thoughts. 

It’s been a long journey but worth every moment. I’m now able to express my love for my family and my dreams and desires. And I can give my family strategies for helping me. This seemingly has changed everything about my life. 

I’m writing this article, pointing one letter at a time to my letterboard in the hopes of reaching the parents of nonspeaking autistics and the professionals supporting them. I am asking you to put aside everything you’ve been taught about your autistic child or student, everything you’ve been told or think you know, and imagine you might be wrong. Imagine they are in there, understanding everything but unable to show it. 

There is a growing community of parents, therapists and teachers who have discovered just that. They are uncovering what decades of experts have missed. Everything about my life changed when I was given a reliable means of communication. I am sharing my story because I am able to. I am one of the lucky few who have been freed from my prison of silence.

This piece was initially published in the .

In 2016, my 10-year-old neurodivergent son was physically restrained and secluded twice at his Maryland public school. Being physically restrained and dragged down a hallway by school staffers and left in a room all alone led to a lot of fear and anxiety for my son and our family. We decided to homeschool him for the next two years.

In 2018, my son decided he wanted to go back to school to be with his friends. Though my family worked with staffers at his new school to ensure that what had happened at his previous school wouldn’t happen again, his excitement and our hopes soon turned to despair. 

During the first 15 days in his new school, my son was repeatedly restrained and secluded, despite strong state laws in Maryland limiting the use of restraint and seclusion to situations where a child’s behavior poses an imminent threat of serious physical harm. His fear and anxiety returned, and honestly, I was afraid to send him back.

A few days following the final incident, I made a simple promise to my son. I told him I would do everything I could to make sure this would not happen again to him, or to other kids like him.

That vow led me to start the , a national nonprofit that works with families, educators and advocates across the country who have had similar experiences. The alliance is on a mission to inform changes in policy and practice that reduce and eliminate the use of punitive discipline and other outdated behavioral management approaches, and to disrupt the school-to-prison pipeline.

When I first started the alliance, my goal was to help families like mine know they were not alone and that they could drive change. In the first few months, I focused on my son’s school district, and in summer 2019, the school board voted to phase out seclusion and reduce the use of restraint.

Today, the alliance is a community of over 35,000 parents, self-advocates, advocates and professionals, including volunteers from 23 states, working together to create positive change. We have 21 affiliate groups and collaborate with many national and state organizations, focusing on legislation, education and support.”

In terms of legislation and policy, we work at the local, state and federal levels. We have collaborated with individual school districts to influence changes in policy and practice. In Vermont, for example, we partnered with the superintendent of a small school district to change its policy to prohibit seclusion and prone restraint. Over the subsequent four years, the district saw a 90.6% reduction in restraint use and a 100% decrease in seclusion.

We have met with lawmakers and provided written and oral testimony in support of efforts to create stronger laws in California, Colorado, Connecticut, Florida, Idaho, Illinois, Maine, Maryland, New Hampshire, Oregon, Texas, Utah and Washington. In my home state of Maryland, we helped draft and pass legislation in 2022 banning seclusion in all public schools.

That same year, I testified before the House Education and Labor Subcommittee on Early Childhood, Elementary and Secondary Education in support of federal legislation to end the use of seclusion and dangerous forms of restraint. While that effort was unsuccessful, we continue to meet with congressional offices to advocate for a federal law.

Today, much of our work is focused on education. We advocate for schools to move away from compliance-based methods that depend on rewards, consequences and coercion, and promote practices that emphasize safety, connection and student voice instead. 

We often present at conferences and events and provide guest lectures for university classes on topics related to reducing and eliminating restraint and seclusion. Over the last year, I have led more than two dozen in-person presentations and panels on restraint, seclusion and trauma-informed practices in Maryland, Missouri, Oregon, Kansas, New York, Georgia, Washington, D.C., as well as online sessions for audiences nationwide. Last year, we also hosted two virtual conferences that reached thousands of parents and educators from across the world.

Finally, we offer support and guidance to parents and professionals. Every week, we hear from families around the country who reach out for help when their child is experiencing restraint or seclusion. Educators frequently contact us for guidance about how to move their school or district away from these practices. These one-on-one conversations fuel a broader movement by equipping parents and educators with tools and strategies to make schools safer and more supportive for all.

The use of seclusion and restraint is a civil rights, human rights and disability rights issue. There are no federal laws governing the use of these practices in schools, but there should be. Recently, Congress reintroduced bipartisan legislation, the , to prohibit seclusion and dangerous forms of restraint and fund trauma-informed alternatives. Congress must pass this bill, and the president must sign it.

America’s schools can and must end seclusion, reduce restraint and improve outcomes for students, educators, families and communities.

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.

The , published Jan. 13 from the , analyzed records from more than 1.7 million Michigan K-8 students who switched from a district to a charter school between 2013 and 2018. 

The nonprofit concluded that while students with disabilities spent more time in general-education classrooms and received less intensive services than their peers in traditional public schools, their standardized test scores increased along with those of their classmates who didn’t qualify for special ed.

Charter enrollment for students with disabilities has historically trailed behind that of public schools. While parents sometimes charter schools after poor experiences with traditional districts, charters also have a regarding special education. One found that charter schools may discourage parents from enrolling their children with disabilities because of concerns about how special education students impact overall academic performance and budgets.

But the results in Michigan show that children who receive special education services do well academically with fewer supports when they enter charter schools, “suggesting charters may have adopted, identified and developed approaches to teaching students with disabilities that warrant further study,” the research says.

“Charter schools can be a useful educational tool for parents with students with disabilities,” said Scott Imberman, one of the study’s authors. “They shouldn’t be quick to rule it out, because it does seem that, for at least a substantial segment of disabled students, charter schools are helpful for them — at least for their academic performance.”

The study found that math and reading test scores improved for both special education and general education students for at least two years after they enrolled in a charter school. Absence rates also decreased.

These findings match a in Boston, which revealed that children with disabilities who were accepted at a charter school through a lottery system were more likely to meet college-ready benchmarks than special education students in traditional public schools.

Imberman said that because children with complicated special education needs tend not to enroll in charter schools, the study’s results suggest students with less severe disabilities can thrive alongside the general-education population.

The study used students’ individualized education plans to see how special education services changed after enrollment in a charter school. Before switching, all students spent an average of 2.3% of their school day in a special education setting. The rate dropped to 1.2% immediately after entering a charter school but rebounded to pre-charter levels by the third year of enrollment.

Identification rates for special education students also mostly stayed the same — around 14.5% — when students switched, but then gradually increased. Two to three years after charter school enrollment, special education identification rates increased 1 to 2 percentage points.

The study also analyzed the use of resource and cognitive programs, two areas of special education services that are tailored to specific student needs. Resource programs often provide services to students who spend most of their school day in a general education classroom, while cognitive programs include more costly and intensive therapies, and students usually work with a designated special education instructor, according to the study. 

Once Michigan students with IEPs switched from a traditional public school to a charter, participation in resource programs increased by 4 percentage points, while cognitive programming decreased by 5 points.

A key limitation of the study is that the research only shows what was written in students’ IEPs and what changed post-enrollment in a charter. It does not reveal whether the school actually followed through with required services. 

“Our data also does not reflect the perspectives of students and families,” the study said. “It is essential that students with disabilities are included in future research on school choice to understand whether their needs are being met in different choice contexts.”

Recently, charter schools in and were found to have violated special education laws, and one in suspended students with disabilities at three times the state average.

Imberman said many charter schools aren’t set up to effectively serve some special education students, especially those with severe disabilities that require costly therapies and assistance.

“This is a large concern in the back and forth with traditional schools and charter schools, particularly when it comes to students with disabilities — that even if students with disabilities are entering charters, the ones who are most expensive are the ones who remain in the traditional public schools,” he said. “That creates a disproportionate burden on the traditional public schools.”

This story was originally published by . for their newsletters.

Sleep is a rare commodity at Lindsay Crain’s house. Most nights, she and her husband are up dozens of times, tending to their daughter’s seizures. The 16-year-old flails her arms, thrashes and kicks — sometimes for hours.

But these days, that’s not the only thing keeping Crain awake. The Culver City mother worries about how President Donald Trump’s myriad budget cuts could strip their daughter of services she needs to go to school, live at home and enjoy a degree of independence that would have been impossible a generation ago.

“Every family I know is terrified right now,” Crain said. “We still have to live our everyday lives, which are challenging enough, but now it feels like our kids’ futures are at stake.”

Trump’s budget includes to Medicaid, which funds a wide swath of services to disabled children, including speech, occupational and physical therapy, wheelchairs, in-home aides and medical care. All children with physical, developmental or cognitive disabilities – in California, nearly 1 million – receive at least some services through Medicaid.

Meanwhile, at the U.S. Department of Education, Trump has gutted the Office of Civil Rights, which is among the agencies that enforce the 50-year-old law granting students with disabilities the right to attend school and receive an education appropriate to their needs. Before that law was enacted, students with disabilities often didn’t attend school at all.

“We have a delicate web of services that, combined, support a whole child, a whole family,” said Kristin Wright, executive director of inclusive practices and systems at the Sacramento County Office of Education and the former California state director of special education. “So when the basic foundational structure is upended, like Medicaid, for example, it’s not just one cut from a knife. It’s multiple.”

Republicans have also suggested moving the office of special education out of the Department of Education altogether and moving it to the Department of Health and Human Services. Disability rights advocates say that would bring a medical – rather than a social – lens to special education, which they described as a major reversal of progress.

Trump has chipped away at other rights protecting people with disabilities, as well. In September, the U.S. Department of Transportation said it that requires airlines to reimburse passengers for damaged or lost wheelchairs. Trump has also repeatedly used the word “,” widely considered a slur, who say it shows a lack of respect and understanding of the historical discrimination against people with disabilities. It’s all if the administration plans more cuts to hard-fought rights protecting people with disabilities.

Fewer therapists, less equipment

The Medicaid cuts may have the most immediate effect. People with developmental disabilities typically receive therapy, home visits from aides, equipment and other services through regional centers, a network of 21 mostly government-funded nonprofits in California that coordinate services for people with disabilities. The goal of regional centers is to help people with disabilities live as independently as possible.

More than a third of regional centers’ funding comes from Medicaid, which is facing deep cuts under Trump’s budget. The money runs out at the end of January, and it’s unclear what services will be cut.

Schools also rely on Medicaid to pay for therapists, equipment, vision and hearing tests and other services that benefit all students, not just those with disabilities. In light of , it’s not likely the state could backfill the loss of Medicaid funding, and schools would have to pare down their services. 

Uncertain futures

For Lelah Coppedge, whose teenage son has cerebral palsy, the worst part is the uncertainty. She knows cuts are coming, but she doesn’t know when or what they’ll include.

“I go down this rabbit hole of worst-case scenarios,” said Coppedge, who lives in the Canoga Park neighborhood in Los Angeles. “Before this happened, I felt there was a clear path for my son. Now that path is going away, and it’s terrifying.”

Coppedge’s son, Jack, is a 16-year-old high school student who excels at algebra and physics. He loves video games and has a wide circle of friends at school. He uses a wheelchair and struggles with speech, communicating mostly through eye movements. He’ll look at his mom’s right hand to indicate “yes,” her left hand for “no.”

Coppedge and her husband rely on a nurse who comes four days a week to help Jack get dressed, get ready for bed and do other basic activities. Medicaid pays for the nurse, as well as other services like physical therapy. Even though Coppedge and her husband both work and have high-quality private health insurance, they could not afford Jack’s care without help from the government.

They also rely on the local regional center, which they assumed would help Jack after he graduates from high school, so he can remain at home, continue to hone his skills and generally live as independently as possible. If that funding vanishes, Coppedage worries Jack will someday end up in a facility where people don’t know him, don’t know how to communicate with him and don’t care about him.

“It feels like we’re going backward,” Coppedge said. “Half the time, I put my head in the sand because I’m just trying to manage the day-to-day. The rest of the time I worry that (the federal government) is looking at people like Jack as medical problems, not as unique people who want to have full, happy lives. It feels like that’s getting lost.”

The current uncertainty is stressful, but it’s even harder for families who are immigrants, Wright said. Those families are less likely to stand up for services they’re entitled to and are facing the extra fear of deportation. English learners, as well as low-income children, are disproportionately represented among students in special education, .

“That’s the other piece to all this — how it’s affecting immigrant families,” Wright said. “It’s a whole other level of anxiety and fear.”

Decades of progress on the line

Karma Quick-Panwala, an advocate at the nonprofit Disability Rights Education and Defense Fund, said she worries about the rollback of decades’ worth of progress that was hard-won by the disability rights community. 

The , the 1975 law that created special education, actually predates the federal Department of Education. In fact, Congress created the department in part to oversee special education. Removing special ed would be a devastating blow to the disability community — not just because services might be curtailed, but philosophically, as well, Quick-Panwala said. 

In the Department of Education, special education is under the purview of education experts who promote optimal ways to educate students with disabilities, so they can learn, graduate from high school and ideally go on to productive lives. In the Department of Health and Human Services, special education would no longer be overseen by educators but by those in the medical field, where they’re more likely to “look at disability as something to be cured or segregated and set aside,” Quick-Panwala said.

“The disability rights community has worked so hard and gave so much to make sure people with disabilities had a right to a meaningful education, so they could have gainful employment opportunities and participate in the world,” Quick-Panwala said. “The idea is that they wouldn’t just be present at school, but they would actually learn and thrive.”

For the time being, Wright, Quick-Panwala and other advocates are reminding families that federal funding might be shrinking, but the laws remain unchanged. Students are still entitled under federal law to the services outlined in their individual education plans, regardless of whether there’s money to pay for it. The funding will have to come from somewhere, at least for now, even if that means cutting it from another program. And California is unlikely to roll back its own special education protections, regardless of what happens in Washington, D.C.

An imperfect but successful routine

Those reassurances are scant comfort to Crain, whose daughter Lena will rely on government support her entire life. Born seven weeks prematurely, Lena has cerebral palsy, epilepsy, a cognitive impairment and is on the deaf-blind spectrum. But she has a 100-watt smile and a relentless spirit, Crain said. Even after the whole family has been up all night, Lena insists on going to school and getting the most out of every day.

Funny and assertive, she has a few close friends and, like many teenagers, plenty of opinions about her parents. She loves her English teacher and spends most of her day in regular classrooms with help from an aide. Her favorite book is about Malala Yousafzai, the Pakistani activist who won a Nobel Peace Prize for fighting for girls’ right to an education.

Between school and home visits from aides and after-school therapists, Crain feels the family has pieced together an imperfect but mostly successful routine for Lena.

“Our entire lives are about teaching her self-advocacy, so she can have the most independent life possible,” Crain said. “Just because you need support doesn’t mean you can’t have a say in your life. There’s been so much work around the culture and the laws and the education system to make sure disabled people can make their own choices in life. We’re absolutely terrified of losing that.”

This article was and was republished under the license.