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

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

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

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

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

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

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

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

Providential, indeed. 

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

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

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

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

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

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

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

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

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

Conditions at Pennhurst were wretched.

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

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

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

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

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

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

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

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

Whatever Bob understood, he did not complain. 

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

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

A Catch-22 for Parents

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

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

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

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

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

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

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

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

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

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

PARC v. Commonwealth of Pennsylvania 

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

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

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

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

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

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

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

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

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

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

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

Creating Special Education

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Ignoring the Experts

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Echoes of a Dark Past

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Yet these cuts are only the latest symptom of a deeper problem: The special education system is failing. Fifty years ago, the (IDEA) was a revolutionary step forward that mandated a free, appropriate public education for students with disabilities, tailored to their individual needs. It has since hardened into a compliance-driven exercise that leaves most of the students it serves without the educational support they need to succeed in school or life.

We understand these failures better than most, having watched our own children’s struggles compound due to their schools’ failures to provide the “basics,” such as a high-quality curriculum, evidence-based instruction, orderly classrooms and a little extra academic support. These are the same things millions of students without identified disabilities also need — but that neither the general nor special education system reliably delivers.

The result is a crisis that long predates the current funding fight, because special education was never designed to help students achieve grade-level expectations. It is a system that prioritizes sorting children into diagnostic categories over improving student learning. Every year, more students are labeled, more money is invested, and yet the results remain the same: Millions of children unable to read, write or calculate proficiently. The problem isn’t too little special education, it’s that special education as we know it does not work.

That’s why the Center on Reinventing Public Education has launched a new project, , that aims to generate conversation and solutions around meeting the needs of students who struggle in school — one grounded in evidence, transparency and a willingness to question the faulty assumptions that have shaped special education for a half-century.

Part of this initiative is the , the first-ever 50-state digital record of rates of students identified as needing services since 1976. The data document America’s increased reliance on special education to address learning and behavioral differences that are more common than those that originally inspired Congress to pass IDEA. But giving more students access hasn’t solved the core problem: Eligibility is based on subjective determinations of disability (something that can’t be measured) rather than demonstration of student need (something that can). As a result, students’ access to special education depends on the local policies and practices used in their schools, creating a huge disparity in services depending on where they happen to live.

While these findings illuminate longstanding inequities, they also open up new opportunities to act. To encourage deeper exploration, CRPE is inviting educators, researchers and advocates to , uncover new patterns and propose ideas for a better system. Selected participants will receive financial support to develop deeper analyses that can help policymakers and practitioners design a new generation of interventions.

Those new insights and fresh approaches could help reimagine the current system from the ground up. Instead of sorting students into rigid categories, schools could respond flexibly to their needs. Instead of disconnected experiences across general and special education, there could be a continuum of evidence-based supports. Instead of investing in gatekeeping, legislators could use analyses of this new dataset to justify allocating resources directly to the instruction and tools students need to succeed.

None of this can happen so long as advocates hunker down in defense of a program that is failing the students it was designed to serve. Instead, is an attempt to give advocates, families and educators the tools to see the system as it truly is and imagine what it could become. Invention can offer hope in the face of despair, abundance in place of scarcity and power to the powerless. Those are the resources disability advocates brought to Congress 50 years ago. They can be tapped again to advance the interests of children with disabilities in today’s challenging political climate.

That’s a reality for too many young children despite the Individuals with Disabilities Education Act (IDEA), which for 50 years has mandated a free and appropriate public education for eligible children with disabilities. While the law doesn’t guarantee inclusive education outright, it sets the expectation that children with disabilities will be educated alongside their peers without disabilities whenever appropriate.

In practice, however, that expectation is often not met. In the 2022-23 school year, fewer than half of preschool-aged children with disabilities received their special education supports and services in inclusive .  

IDEA obligates the federal government to cover 40% of average special education costs, but it currently covers around — creating a shortfall that can to place students with disabilities in separate special education classrooms rather than inclusive ones. States must make inclusion the default, not the exception, to bridge that gap. Achieving this will require partnerships among general and special education teams, schools and community organizations, as well as the coordination of investments in accessible facilities, adaptive equipment, data systems and inclusion-related school policies and practices supported by federal, state and local funding.

It is a worthwhile investment. shows that children with disabilities benefit socially, emotionally and academically in inclusive early childhood classrooms. High-quality early education also for later special education services. Meanwhile, children without disabilities do l in inclusive classrooms as they do in general ones.  

Even so, in many places there are numerous barriers to inclusive early learning. Fortunately, they can be overcome through coordination, planning and investment. California’s is one strong model that other states can learn from and adapt. 

Funded by the California Department of Education, the program awarded grants to 65 school districts and county offices of education between 2020 and 2024. These focused on increasing access to inclusive early learning for children with disabilities, including those with significant or complex needs. Grantees used funds to address key barriers to inclusion, including a lack of available seats, staffing shortages, gaps in training, inaccessible facilities, limited access to adaptive equipment and disjointed coordination among programs that serve families of young children with disabilities, such as Head Start, preschools and providers of special education and early intervention services. 

of the program found local leaders directed resources toward several types of improvements. First, grantees expanded and renovated early learning facilities to meet Americans with Disabilities Act standards for accessibility and to accommodate more children with special needs. These included upgrades to physical environments, the purchase of materials to enable full participation in classroom activities and lending libraries for adaptive and specialized equipment to help children participate in learning and play. Many programs also had to restructure staffing so special education personnel could more consistently assist in general education classrooms. 

Second, grantees invested heavily in workforce development. More than 15,000 early educators participated in professional development on inclusion. The majority reported that they increased their awareness of the benefits of inclusion, deepened their knowledge of inclusive practices, and improved their ability to apply them in their own classrooms. Early educators also said the training strengthened their confidence in their ability to implement inclusive classrooms.  

Some grantees invested in adaptive equipment and introduced training specifically focused on using it to bolster individual children’s participation in classroom activities. Educators reported that this helped them better meet diverse needs, make activities more accessible and strengthen inclusive teaching practices. 

Although the program focused on state-subsidized preschools, 75% of grantees extended professional development on inclusion to community providers. This helped build a broader network of early educators prepared and increasingly willing to support children with disabilities, including those with significant needs. 

Providing multiple opportunities for staff to complete professional development, including virtually, can help schools address staffing shortages that would otherwise prevent educators from accessing professional development.  

Crucially, the program fostered stronger partnerships. Grantees collaborated with local partners, including Head Start agencies, early intervention providers, special education teams and county offices of education, to develop systems for identifying, referring and enrolling children with disabilities in inclusive classrooms. 

Local partners entered into formal agreements to reserve enrollment slots for children with disabilities or to provide special education services to students enrolled in early learning programs. Partners also developed common visions for inclusion, including shared definitions, goals and tools to raise public awareness. Collectively, these efforts expanded access to inclusive early learning for children with disabilities. 

WestEd’s evaluation also found that consistently sharing information among preschools, special education providers and early intervention programs is just as essential as investing in infrastructure, staffing and training when it comes to building and sustaining inclusive early learning programs. Reliable, shared data helps states track who is receiving services and direct resources where they’re most needed. 

As part of the program evaluation, WestEd surveyed more than 2,000 families and conducted focus groups with 100 others. Three-quarters of families — both of children with and without disabilities — reported that inclusive early learning settings positively impacted their children. Families of youngsters with disabilities reported gains in social-emotional skills, communication and peer relationships, while families of children without disabilities described how their children learned to appreciate diverse ways of learning and interacting. 

The promise of IDEA is within reach, but fulfilling it requires sustained investment and coordination across agencies and early childhood programs. California’s Inclusive Early Education Expansion Program shows what’s possible when those pieces are in place. With the right supports, inclusion can become the norm, enabling all children to learn and thrive together.   

Now, with the rise of private school choice, lawmakers are on the verge of further eroding their commitments to students and families. Instead of fully investing in IDEA and embracing its promises of ensuring all children can access and receive the services they need — something America has never done — Congress is considering passing the so-called “One Big Beautiful Bill” (), which would only further undermine the rights and opportunities of students with disabilities. 

The bill would by slashing Medicaid and other funding for programs that help students with disabilities in public schools. But the require private schools to admit these children, or provide the same level of services as a public school must. Other than unenrolling and switching schools yet again, families of kids with disabilities would have no way to hold these schools accountable for providing services.

I know firsthand what accountability looks like in a private school setting — and it’s bleak. My son was recently evaluated for special education eligibility because of developmental delays, a process we navigated independent of his private preschool. Soon after his diagnosis, the school began calling family conferences to complain about his behavior, having never raised any concerns during the two previous years. The school alleged he was having trouble listening, completing classwork he doesn’t enjoy, and standing or sitting still; it demanded that we find, pay for and send a therapist to school. 

My son is 4 years old. When he’s running around, it’s because he’s pretending to be Sonic the Hedgehog — typical preschool behavior. The school administrator said they were at a loss for what to do, and that if we didn’t fix my son’s behavior, then the school was no longer a good fit. The school relinquished any responsibility for how they might adapt to meet my son’s needs. It felt like they had made a unilateral decision to push him out once they realized he had developmental delays. 

As an attorney and advocate for children with disabilities, I’ve spent nearly two decades working to ensure that schools are welcoming places for families, providing instruction that meets the needs of all students. I’ve sat in versions of this meeting dozens of times with kids of all learning profiles. But experiencing it as a parent, I felt shame, defensiveness and anger. Private school choice is intended to empower parents to find the education that best meets their children’s unique needs and different learning styles. Yet, a school of choice was telling me that it was choosing not to serve my son.

The administration wasn’t responsive to my suggestions for what it could do differently to engage with my son — and they don’t have to be. It’s a private school. It is free to define a narrow box of acceptable child behavior and wait for kids to fit into it. The private school is not accountable for the same expectations and responsibilities that I can expect of my local public school, where my son now receives specialized instruction, along with speech and occupational therapy. Expanded private school vouchers and the policies espoused in H.R. 1 could result in thousands more students being put in the same position as my son.

I am not one to defend maintaining the status quo for students with disabilities across the nation. But the country can and we must do better. America’s children and adults with disabilities can be undone only by actively prioritizing their inclusion. As citizens, we cannot passively assume it will happen.

Giving up on the promise of IDEA and disinvesting in public schools is not the answer. Neither is lowering the bar for services and somehow expecting better results. The solution lies in a relentless commitment to quality and accountability. This means adequate local and federal resources and meaningful accountability structures to support all public schools and policies that help all children. Congress must honor the promise made 50 years ago and reject H.R. 1. 

The consequences are real and immediate. Many districts are struggling to plan effectively for the upcoming school year amid the uncertainty. Meanwhile, the 7.5 million students served under IDEA — 15% of the U.S.  student population — continue to face stark disparities: achievement gaps of more than 40 points on national assessments, twice the suspension rates, three times higher dropout rates, and dramatically lower college enrollment compared to nondisabled peers. Despite 50 years of federal mandates, the current system still fails these students, raising urgent questions about what could happen if those safeguards erode.

I’m not writing to simply sound another alarm. The reality is that when federal protections unravel, state and local leadership becomes the first line of defense. That responsibility can feel daunting, but it also comes with opportunity. In many places, local leaders are already stepping up, showing that progress is possible even in the face of uncertainty. In a midsize district in Vermont where schools committed to clear expectations, coaching and data-informed practices, the quality of students’ Individualized Education Programs (IEPs) improved on The Ability Challenge’s IEP rubric by 40% in a single year. Better IEPs directly help students because they accurately identify learning needs, set meaningful goals connected to grade-level standards and specify the right supports to help students succeed.

Leaders of this district and others who are moving forward aren’t starting from scratch. They are drawing on what decades of research have made clear: that students with disabilities thrive when they learn alongside their peers in classrooms designed to support all learners. Success means improving processes to create clear pathways and align resources — rethinking how schools group students, measure progress and embrace learning differences. Effective leaders build inclusive systems that ensure compliance while improving outcomes.

Here are a few key steps schools  and districts can take (and states can reinforce) to protect students with disabilities and enhance learning for all students:

Champion inclusive education as a whole-school benefit. consistently shows that focusing on making schools and classrooms more accessible benefits everyone, not just students with learning differences.  Schools that invest in these practices can avoid wasting resources on separate classes or duplicate services and create a more collaborative workplace where teachers feel valued and effective. 

Invest in collaborative models. The most successful schools have a common feature: They maximize the time general and special educators work together to plan instruction and build on each other’s expertise. One D.C. charter school that developed an interdisciplinary team to address behavior issues , shifting teachers’ time from managing individual students’ actions to increasing instruction for everyone.

Redesign schedules to maximize capacity. Planning a school schedule can be a highly intensive process that involves many priorities and moving parts. Fitting them together takes a great deal of attention, and technical tasks like student and staff grouping and scheduling can be overlooked. A Northeastern middle school strategically redesigned its schedule to ensure that special education teachers integrated specialized instruction for students with IEPs within their grade-level reading and math classes. This created more efficient use of teacher time by reducing the need for separate pullout groups, provided all special education instruction required by student IEPs, minimized instances where students missed important content and allowed for weekly planning meetings for each teaching team.

Train leaders to coach for inclusive practice. Many general education teachers  —, by some estimates — report feeling unprepared to teach students with disabilities, not because they don’t care, but because they haven’t been given the tools or time. When instructional leaders provide coaching that addresses how students with learning differences engage with content, achievement improves. In another D.C. charter network where assistant principals were trained to identify and coach all their teachers on learning differences and specialized instruction, achievement gaps between students with disabilities and their non-disabled peers shrank to across grades. 

Develop creative solutions to maximize resources and impact. This could include neighboring school districts sharing costs of speech therapists or behavior specialists, partnerships with local universities or arrangements with third-party providers to train staff on inclusive teaching methods. These partnerships can fill gaps in expertise, provide guidance on implementation and help districts sustain momentum on improvement initiatives.

These examples show what’s possible when schools commit to accessibility for all students. Making this the norm means taking these successful approaches — collaborative teaching teams, strategic scheduling, shared expertise and inclusive classroom practices — and implementing them systematically across entire schools and districts.

While state and local leaders drive immediate change, strong federal protections remain crucial for ensuring consistency and access. History has shown that without federal oversight, vulnerable students face dangerously inconsistent support. Education leaders must both advocate for maintaining robust federal accountability and act boldly at state and local levels. State education leaders, superintendents and district administrators cannot wait — they must set clear priorities, allocate resources strategically and maintain essential services despite uncertainty. 

The cost of inaction is far greater than the investment required for change. While federal policies may shift, the imperative for building educational systems where disability doesn’t determine destiny is critical. The question is whether state and local leaders have the courage.

Adding to the legal challenges over the U.S. Department of Education’s efforts to rid schools of DEI, 19 Democrat-led states sued Friday over an April 3 “dear colleague” letter.  

The threat to withhold funding if states don’t sign what the complaint calls “a novel and unlawful certification” would be “catastrophic for plaintiff states’ students from kindergarten through high school,” the attorneys general wrote.

Collectively, the Democrat-led states stand to lose almost $14 billion, including Title I money for low-income schools and funds for students with disabilities. The complaint asks a federal district court in Massachusetts to declare the April 3 letter unlawful and prevent the department from taking any action based on its interpretation of anti-discrimination laws and the Supreme Court decision that ended racial preferences in college admissions.

States and school districts resisting a U.S. Department of Education ultimatum regarding diversity, equity and inclusion got a temporary reprieve Thursday. Two federal judges — one in and another in the — blocked the department’s ability to withhold federal funding from those that didn’t to its interpretation of non-discrimination laws or agree to end what officials called “impermissible” DEI programs.

A third judge in suspended for now a Feb. 14 “” letter warning districts against racial diversity efforts. The deadline to sign a form certifying compliance was Thursday.

States and districts are “no longer under the immediate threat” of losing funds if they “continue to offer long-standing lawful programs or don’t sign” the form, said Katrina Feldkamp, assistant counsel at the Legal Defense Fund. Representing the NAACP, the law firm is among several groups, including unions, school districts and advocacy groups, involved in three separate lawsuits over the department’s anti-DEI guidance. 

In a statement, Randi Weingarten, president of the American Federation of Teachers — part of the Maryland case — called the court’s ruling “a huge win for students, families and educators.” 

The department’s follow-up on Feb. 28 appeared to soften officials’ stance on practices it considers illegal, saying cultural and historical observances were acceptable as long as all students were welcome to participate. But the certification requirement took a firm tone, cautioning states that they could face substantial financial penalties if they sign it and are then found to be in violation. 

“The court finds that threatening penalties under those legal provisions without sufficiently defining the conduct that might trigger liability violates the Fifth Amendment’s prohibition on vagueness,” Judge Dabney Friedrich of the U.S. District Court for the District of Columbia, said in her oral ruling granting a preliminary injunction. The department’s documents, she said, “placed a particular emphasis on certain DEI practices without providing an actual definition of what constitutes DEI or DEI practice.”

At the time of publication 12 states, including Arizona, Arkansas and Montana, and the District of Columbia, had signed the certification. Twenty-two, including California, Michigan and New Mexico, declined to sign, and 17 either hadn’t announced their decision or did not respond to calls or emails from Âé¶čŸ«Æ·. Madi Biedermann, spokeswoman for the Education Department, said she didn’t know if officials would share the full count of states complying. She didn’t respond to a request for comment on the court rulings. 

Signing the form indicates compliance with Title VI, which prohibits discrimination on the basis of race, color and national origin, as well as the department’s view of a 2023 Supreme Court ruling against racial preferences in higher education admissions. 

State chiefs who didn’t sign argued that the Education Department didn’t clearly define DEI and ignored proper procedures for collecting such information. Overall, the documents have left leaders bewildered over whether they stand to lose millions in federal funds. In Denver Public Schools, for example, roughly $36 million in Title I funds for high-poverty schools and another $20 million for special education services are at stake. Like state chiefs in several other blue states, Colorado’s Susana CĂłrdova to sign the document. 

“I think all districts across the country are forced to grapple with this question of ‘What would you do without it?’ ” said Chuck Carpenter, chief financial officer.

Title I funds in his district, Colorado’s largest, cover salaries for school social workers, help to reduce class sizes and support interventions for students who are behind academically. 

“These are very much on-the-ground expenses,” he said. “This doesn’t get caught up in the bureaucracy. This is for real kids and real people.”

Several GOP state chiefs welcomed the department’s message. Arizona state Superintendent Tom Horne , “Thank you for fighting for our Constitution and laws!” along with his signature. Oklahoma chief Ryan Walters posted of himself at his desk signing the form. 

“No DEI in Oklahoma schools,” he said. “We will talk about merit and American exceptionalism, and we’ll have the best school system possible, thanks to President Trump.”

While some state and district leaders likely viewed the form as a “box to check,” others may see it as “provocation,” said Jackie Wernz, a civil rights attorney and consultant who worked in both the Obama and first Trump administrations.

“The department’s shifting guidance in recent months has created a lot of confusion in the field,” she said. “It’s not always clear whether this is a legal compliance issue or a political messaging moment.”

Even some critics of DEI agree. Steven Wilson, a senior fellow at the free market-oriented Pioneer Institute for Public Policy Research in Boston, argues that many schools, including high-performing charter networks, went astray by embracing anti-racist teaching approaches. 

He pointed, for example, to author that “worship of the written word” is evidence of white supremacy and framing around social justice issues. 

“These teachings are enormously destructive,” said Wilson, who founded the Ascend charter school network in Brooklyn, New York. “I would be hard pressed to think of a more damaging message to impart to teachers of Black and brown children than that the worship of the written word is whiteness.” 

But Wilson views the department’s threat to federal funding as equally harmful. “The audacity” of tying the compliance form to funding for programs that serve students in poverty and those with disabilities, he said “has to be vigorously contested.” 

‘Historically underserved’

Title I, the biggest federal education program, totals over $18 billion. Part of the 1960s War on Poverty, it has “really been a cornerstone of federal funding in K-12 for the better part of a century,” said Jess Gartner, founder of Allovue, a school finance technology company that’s now part of PowerSchool. The Individuals with Disabilities Education Act, currently funded at $15 billion, came a decade later in 1975. 

Officials can’t withhold those funds with “a wave of the hand and a strike of the pen” or because “someone won’t sign a form,” Gartner said. “There is for reporting, investigating and determining that discrimination has actually occurred.” 

In 2023, under former Education Secretary Miguel Cardona, the department withheld federal funds from Maine for not meeting state testing requirements. But that was after two years of being out of compliance, and officials the state could reserve for administrative costs — not the money that goes to schools.

The Trump administration has demonstrated that it will abruptly cancel funding that has already been approved by Congress. That’s why finance officers like Carpenter in Denver are on edge about how the department will respond to states that didn’t sign the form. 

Title I funding supports about half of the Denver district’s 207 schools, where immigrant and non-English-speaking parents especially rely on liaisons like Boni Sanchez Florez. He helps them access after-school classes, mental health services and low-cost internet. But  Florez also encourages them to take leadership roles and speak up about issues that affect their children, like .

“It’s hard enough for them to walk in a building with a staff that is predominantly 80% white. How do you build that trust in a community that doesn’t trust the system?” asked Florez, who moved to the U.S. from Mexico as a child. “If I’m in my dad’s shoes 30 years ago, I would want people to reach out to me.”

Nearby in Jeffco Public Schools, Colorado’s second largest district, roughly 100 staff members are directly paid with Title I funds, said Tara Peña, chief of family partnerships and community engagement. They include three “family ambassadors” who work out of a mobile welcome center — a customized bus that hosts enrollment fairs, book giveaways and what Peña called “goodwill events.”

The welcome center staff signs families up for Medicaid or free lunch programs and teams up with other community groups to distribute school and hygiene supplies.

“A loss in federal funding would be very destructive and be very impactful to the supports and the services that we provide to our most vulnerable students,” Peña said. “The students who’ve been historically underserved would continue to be the ones that would be harmed.” 

‘Four years?’

The potential cuts to funding also come as districts across the country are finalizing their budgets for the upcoming school year, with federal funds in mind. Before McMahon announced the certification requirement on April 3, most had already issued contracts for staff for this fall. 

In California, which receives over $2 billion in Title I funds and almost $1.6 billion from IDEA, the deadline to issue any layoff notices was March 15. 

That means districts would still be obligated to pay employees whose salaries come from those sources “whether they get funding or don’t,” said Michael Fine, CEO of the Fiscal Crisis and Management Assistance Team, a state agency responsible for financial oversight of districts. “Districts did not contemplate such a loss before the March 15 layoff window.”

Districts in Michigan, another state that declined to sign the form, are in the same predicament. For now, the Detroit Public Schools Community District — where roughly 25% of the budget comes from federal sources — has committed to not letting any employees go. But Jeremy Vidito, chief financial officer, said that could just be a temporary solution if the department fully cuts Title I. 

“Maybe we can bridge two years with our fund balance. But four years? There’s no way,” he said. “It will mean school closures. It will mean reduced services for our kids and walking back the intervention programs.”

With a student poverty rate of  more than 80%, the nearly $125 million Detroit receives in Title I funding pays for counselors, social workers, and art and music teachers, as well as  high school administrators who are focused on keeping ninth graders on track for graduation. 

For LaQuitta Brown’s son Kermari, a 7 year old with autism, art has been especially important. He struggled to speak until last year, but he could communicate with his mother by drawing pictures, Brown said. Through special education, he receives speech and occupational therapy. His mother also depends on a mobile vision screening program for his checkups.

“He wouldn’t be where he would be without those services,” she said. “It takes a village, especially when you have a child needing special attention.”

Title I also supports high-dosage tutoring in Detroit, one of the reasons, Vidito said, why the district outperformed most other large, urban systems in a from researchers at Harvard and Stanford universities. Last school year, the district also saw in reading than the state as a whole.

“We are seeing results,” he said. “We have committed to educating all kids, but if we start to defund education, then we’re stepping back from that commitment.”

Most right-leaning think tanks, like the Heritage Foundation, welcome the department’s certification requirement and its interpretation of the decision. 

That opinion didn’t mention K-12 schools, but it has “broad implications for the use of racial preferences in public education services at the K-12 and postsecondary levels,” said Jonathan Butcher, a senior research fellow at the Heritage Foundation. “The majority opinion and supporting opinions deal with rooting out racism writ large from education.” 

But Wilson at the Pioneer Institute said the AFT lawsuit is “one of those relatively rare moments” of agreement he has with AFT President Randi Weingarten. She said the anti-DEI directives would hamper schools’ efforts to teach accurate history, including the harms of slavery and persecution of minority groups. 

“If that is what [the department] has in mind as a federal prohibition, that would be devastating.” he said. Trump, is “claiming, rather flamboyantly, to devolve education back to the states while announcing this unprecedented intrusion into what schools and districts may teach.”

Âé¶čŸ«Æ·’s Mark Keierleber contributed to this story.

In Virginia, state education officials could be partly to blame.

The federal government whether the Virginia Department of Education misled school districts about their responsibility to serve students with disabilities during school closures. The probe focuses on whether the department allowed districts to deliver services that “fell short” of the free and appropriate education required under federal law. 

At the time, former Education Secretary Betsy DeVos districts still had to serve students with disabilities despite the shutdown. But Virginia’s  during that period said officials should “acknowledge service delivery limitations” and then make “reasonable efforts” to follow a student’s special education plan — known as an individualized education program —once schools reopened.

Districts across the state released documents saying that some services would be “functionally unavailable” because students were learning remotely and that educators would do their best to serve students online and by phone. 

The state education department “provided cover to the school systems for whatever type of 
 remote learning or virtual instruction” they provided, alleged Reade Bush, an Arlington, Virginia, father and part of the coalition of parents that asked the U.S. Department of Education’s Office for Civil Rights to investigate. “There was no attempt to make it compliant for students who could not engage in virtual learning.”

Virginia is the third state OCR has investigated for its handling of special education services during the pandemic. OCR dropped its investigation in Indiana in June, 2021, saying that it had no evidence the state was denying services to children with disabilities. Another investigation is ongoing.

The Department of Education all states last month of their responsibility to ensure districts follow the law and suggested that some need to tighten supervision. Twenty-two states and the District of Columbia have of the Individuals with Disabilities Education Act for at least two years, and six states, including Virginia, didn’t meet expectations this year, according to the department.

Advocates welcomed the department’s guidance. Denise Marshall, CEO of the Council of Parent Attorneys and Advocates, a nonprofit focusing on students with disabilities, said monitoring “has been sorely lacking at all levels,” but added that even when states make improvements, federal officials should take “meaningful action” when needed. 

‘The system is just horrible’

The federal inquiry in Virginia is the latest challenge facing the state for its oversight of services for students with disabilities. Fairfax County parents and the state agency last fall, stating that “school-friendly” hearing officers who review parents’ complaints overwhelmingly rule against families. A federal district court last month, but the plaintiffs plan to appeal to the U.S Court of Appeals for the Fourth Circuit.

The state’s failure to hold districts accountable is a long-standing problem that , according to special education advocates. Gov. Glenn Youngkin, who made parent empowerment a centerpiece of his campaign, has special education, but some state board members remain frustrated.

“The system is just horrible in every which way 
 anti-family, pro-lawyer, pro-litigation,” Board Member Bill Hansen said during .

Virginia has had three education chiefs since the beginning of the pandemic. James Lane, the superintendent when COVID hit, is now an acting assistant secretary at the U.S. Department of Education. In that role, he recused himself from Virginia education matters and OCR hasn’t discussed the investigation with him, according to the department.

Youngkin appointed Jillian Balow to replace him. She served a little over a year before resigning in March. When she stepped down, she told Âé¶čŸ«Æ· that special education “is the most complex work that goes on in a state agency,” but declined to make additional comments because of the lawsuit. 

Now Lisa Coons, former chief academic officer in Tennessee, is in charge. She also declined to comment on the OCR investigation, but told the board during the June meeting that she’s making changes, such as opening a parent engagement office and taking more authority over special education.

Michael Adamson, an attorney representing the family in the lawsuit against Fairfax schools and the state, said “lack of oversight 
 results in a kind of Wild West” and “really bad behavior” at the district level. 

‘Better off in Haiti’

The state told a Fairfax County parent in March, 2021, that it wouldn’t override a district’s decision to only offer remote learning and that district leaders were “best positioned” to determine services. By that point, federal civil rights officials were the district’s failure to provide them. 

Now Fairfax, in an agreement with OCR, must implement an to offer compensatory education — the term for make-up services districts owe students when they fail to provide them in the first place. The district wouldn’t comment on the state’s guidance.

Bush and his wife, who adopted two children from Haiti in 2013, had a similar experience. His 11-year-old son, who is autistic, was among the first students that the Arlington Public Schools allowed to return to school in January of 2021. But he spent his days on an iPad, learning from an aide in another room, despite a doctor’s recommendations that he needed to interact with other children. The Arlington district did not respond to a request for comment.

Bush’s son lost reading skills, made up imaginary friends after months of isolation and, like some children with autism, began incessantly “scripting” — repeating lines from movies or TV shows. In his son’s case, it was play-by-play commentary from football games. He did hundreds of cartwheels a day and lost motivation for learning and wrestling, a sport in which he had excelled.

“He really nosedived. We’re still trying to get him back,” Bush said. “My son would be better off in Haiti of all places. They kept .”

Bush and other parents continued to face opposition when asking districts for compensatory education.

His son received six and a half hours of reading support in 2021, and another 25 hours in 2022 after he showed Arlington officials test data and samples of his son’s work. Now entering sixth grade, he’s two years behind in reading.

In rural Page County, Jordan Choe’s two children, 9 and 7, have autism, ADHD and dyslexia. 

During the 2021-22 school year, Choe chose to keep the children in the Page district’s optional virtual learning program. The students had access to Edgenuity, an online learning platform, but no special education services. 

He complained to the state, which said in a letter to the family that remote learning “was never designed” to comply with special education law. 

The family eventually hired a private tutor. 

“We lived on mac and cheese and hot dogs to be able to pay for this,” Choe said. 

‘Not unique’

Special education advocates say Virginia waited too long to heed the federal government’s warnings. But families in the state certainly aren’t the only ones still seeking compensatory education

“What is happening in Virginia is not unique,” said Diana Heldfond, founder and CEO of Parallel Learning, a company that provides virtual assessment, therapy and instruction for districts, including some in Virginia. 

She partly attributed the breakdown of special education during the pandemic to underfunding.The law says federal funds should cover 40% of the cost of education for students with disabilities, but in reality it’s . 

Students and teachers pay the price, said Anne Holton, another Virginia state board member.

“I have seen 
 teachers [with] 
essentially no training at all dealing with some of our children with the toughest needs,” she said during the June meeting. “It’s no surprise at all to me that 
 everybody is frustrated, including the teacher.”

Disclosure: Andy Rotherham is a member of the Virginia Board of Education and a member of Âé¶čŸ«Æ·â€™s Board of Directors.

The justices reversed a decision by the Court of Appeals for the 6th Circuit that prohibited Miguel Luna Perez from seeking financial relief under the Americans with Disabilities Act because his family accepted a settlement under special education law.

“We clarify that nothing in that provision bars his way,” Associate Justice Neil Gorsuch wrote in the opinion, referring to the Individuals with Disabilities Education Act. He added that the court took the case because it has consequences for “a great many children with disabilities and their parents.”

In a statement, Roman Martinez, Luna Perez’s attorney, said the family now plans to pursue a lawsuit against the Detroit-area Sturgis Public Schools under the Americans with Disabilities Act. 

The “court’s ruling vindicates the rights of students with disabilities to obtain full relief when they suffer discrimination,” he said.

The case focused on whether Congress intended for families to relinquish their rights to sue for monetary damages when they agree to a settlement under IDEA to get their children services as quickly as possible. But advocates for school districts, such as AASA, the School Superintendents Association, argued that districts could be facing multiple lawsuits from the same family.

“This is a significant ruling, and an unsurprising decision based on the oral argument,” said Sasha Pudelski, advocacy director for AASA. “We have deep concerns with injecting a legal battle over money into the IDEA process and how this ruling may undermine parents’ willingness to collaborate with districts in crafting an appropriate special education program for a child.”

Luna Perez, whose family emigrated from Mexico, entered the Sturgis schools in 2004, when he was 9. He didn’t know American Sign Language or English. The district assigned him an aide who couldn’t sign, invented hand signals to communicate with him and often left him alone for hours. 

He received good grades, but before graduation in 2016, the district told his parents that he would not be eligible for a high school diploma — only a certificate of completion. The family sued under IDEA, which resulted in a placement in the Michigan School for the Deaf. But the family also argued that their son should be compensated for being left without the skills to get a job. IDEA includes a number of procedural steps before a case can go to court and doesn’t provide financial relief. 

The only remedy available under IDEA is compensatory education services. But Rebecca Spar, a special education attorney with the New Jersey-based Education Law Center, said that’s less important to an adult who needs to support himself.  

“It was the kind of case where appropriate education going forward could not remediate the harm to the student,” she said.

Advocates for English learners said there are lessons in the case for how districts serve immigrant families whose children have disabilities. Schools need to ensure immigrant families understand their rights and provide interpretation and translation services, said Cady Landa, a researcher at the University of Illinois Urbana-Champaign who has the obstacles facing such families.

In the Sturgis schools, things have changed since Luna Perez was a student, said Superintendent Art Ebert, who has been with the district since 2018. The district has an interpreter and is expanding its special education department. Depending on their needs, some students with disabilities attend programs offered by county-level intermediate districts if local schools can’t provide the services.  

“I do believe that every experience provides us with an opportunity to learn and grow,” Ebert said.

A lower court ruled that Miguel Perez, now an adult, is not entitled to sue for monetary damages for emotional distress or lost income under the American with Disabilities Act because his family settled the case under special education law. 

“The parents were really over a barrel here,” said Mark Weber, a law professor at DePaul University in Chicago who co-wrote to the court on behalf of the plaintiff. “They needed to get services right away for this kid. The kid’s not getting any younger.”

While the case, , delves into the complex procedural rules that govern special education, it speaks to the frustration many families whose children have disabilities feel in systems that often seem stacked against them. Navigating that legal landscape is even trickier for immigrant families, who are “likely unfamiliar with U.S. school systems” and are unused to the “idea of children with disabilities having a right to education,” said Cady Landa, a researcher at the University of Illinois Urbana-Champaign who has the obstacles immigrant families face when seeking special education services. 

Immigrant parents, she said, are often unsure how to talk to school staff and may have “smaller social circles that are less likely to include other parents who have navigated special education for their children.” 

The Perez lawsuit asks whether families can sue for damages under other federal laws that prohibit discrimination even if they haven’t exhausted their rights under the Individuals with Disabilities Act, or IDEA. Perez’s petition argues that there’s a conflict in the lower courts over this issue. 

But lawyers for the Sturgis district disagree. They also note that the Supreme Court ruled last year that the Americans with Disabilities Act for emotional distress and that Perez changed his request to ask for lost income.

“Now he says in his reply that he wants to amend his complaint,” they wrote. “Too late.”

‘Academic and social outcast’

Perez, now 27, entered the Sturgis, Michigan, school district in 2004 as a 9-year-old deaf English learner from Mexico. The district assigned him a classroom aide who didn’t know sign language and even made up hand signals to try to communicate with Perez, according to court documents.

“There was one other deaf student, but we couldn’t communicate with each other,” he said in a statement provided through an interpreter. 

As he got older, the assistant would often leave Perez alone for hours, “rendering him unable to learn or communicate with others and making him an academic and social outcast,” according to his lawyers.

Despite not being able to read or write, Perez received A’s and B’s and made the honor roll every semester. But just weeks before he was set to graduate in 2016, the district told his parents that he would only be eligible for a certificate of completion, not a diploma.

The case, Landa added, points to the need for more translation and interpretation services, specifically for newcomer families whose children have disabilities.

In 2017, the family filed a complaint with the Michigan Department of Education, arguing that the district violated IDEA, the Americans with Disabilities Act and the Rehabilitation Act, as well as two state laws.

In 2018, they settled the IDEA claim. The district agreed to place Perez in the Michigan School for the Deaf, pay for additional services and provide the family with sign language instruction. The district also paid the family’s attorney’s fees.

But that left the remaining complaints under the other laws unresolved, leading the family to file a lawsuit in federal district court, asking for social work services and additional financial relief. 

“I wish I could have gone to college,” Perez said. “I don’t have a job, but I want to have one. I want to make my own choices.”

The 6th Circuit ruled the family wasn’t eligible to sue because their IDEA complaint never went to a hearing.

‘Trying to settle’

The special education complaint process allows parents multiple opportunities to avoid drawn-out legal battles so children can be served as soon as possible. Districts automatically hold and can offer settlements before parents go to court.

“All the way, you’re trying to settle,” said Rebecca Spar, a special education attorney with the New Jersey-based Education Law Center. 

In in support of the school district, administrator organizations — such as AASA, the School Superintendents Association and the National Association of School Nurses — argued that a decision in favor of Perez would “undermine the collaborative nature of the IDEA process, and will shift the parties’ focus to money rather than the student’s education needs.”

Another issue is the cost of litigation, which often discourages families from suing.

“If you decide not to settle with them, they just start running up the legal bills. Our trial was eight days,” said Hayley Grunvald, a San Diego-area parent who is awaiting the outcome of the Perez case. “It’s unaffordable for any parent. I don’t buy Prada bags. I shop at Walmart.”

She filed a complaint against the San Dieguito Union High School District, arguing that officials didn’t evaluate her son Adrian for special education even though they knew he received accommodations and services for ADHD in a prior district.

In December, a judge agreed that the district should have assessed Adrian, but the family lost on other technical points and plans to appeal.

Experts expected the Supreme Court to settle the issues before the court in Perez back in 2017 when they heard . In that case, the Supreme Court found in favor of another Michigan family who sued under the Americans with Disabilities Act and Section 504 when officials wouldn’t allow a service dog to accompany their daughter to school. 

The girl has cerebral palsy and the dog helps her stay balanced while using a walker, opens and closes doors and provides other services that help her be more independent. The family sought monetary damages, saying their daughter experienced “emotional distress and pain, embarrass­ment, [and] mental anguish.”

The appellate court had ruled that the family would have to exhaust the IDEA process before suing under other laws even though it wasn’t a special education case. The Supreme Court disagreed, but left open the question of whether a family still has to seek relief under IDEA given that monetary damages aren’t available under that law.

“Had it clarified everything,” said Weber at DePaul University, “we probably wouldn’t have this case.”

The Senate on Thursday passed a continuing resolution that averts a government shutdown, but keeps funding at the same level as last school year. The bill passed 69 to 28.  The resolution passed in the House 221 to 212 earlier in the day. 

The Senate now has until Feb. 18 to finalize appropriations for the remainder of fiscal year 2022. “This is not a substitute for doing our work,” said Democratic Sen. Patrick Leahy of Vermont.

Every year, the Twin Falls School District in Idaho hires about 125 paraprofessionals to help ease the workload on teachers of students with disabilities. 

And every year, Kindel Mason, the district’s director of student support services, watches about a quarter of those staff members leave for Ore-Ida, Chobani or even fast food joints, where they can make more than the $10.99 an hour he’s offering. An increase in federal funding for special education, he said, would allow him to hike pay and benefits “so I don’t have to train staff for the same position every year.”

As part of the fiscal year 2022 budget, President Joe Biden proposed a $2.6 billion increase in funding for the Individuals with Disabilities Education Act, or IDEA, which would be the single largest, one-year funding increase ever for the law and bring the total to $15.5 billion. The increase would follow the $2.5 billion for special education included in the March federal relief bill.  

But with Congress likely to delay a decision on the federal budget a second time, the chances grow slimmer that districts will see that significant increase for students with disabilities.

As in September, Congress is racing to once again avoid a government shutdown. Late Thursday, the House is expected to pass a second continuing resolution, which would last until mid-February. Then it would go to the Senate Friday, where some Republicans are threatening to over Biden’s workplace vaccine and testing mandates. The question is whether Democrats and Republicans can reach a compromise on annual appropriations in two and a half months. If not, action on the federal budget could get pushed into the spring when the administration will already be working on proposals for fiscal year 2023. 

Advocates and school leaders say the pandemic’s impact on students with disabilities — many of whom did not receive mandated services during remote learning — only heightens the need for more resources. And now that most students are back in class, many schools are scrambling to fill positions due to labor shortages. Biden has said his funding proposal would be a toward fully funding IDEA, meaning that the federal government would pick up 40 percent of the costs of services. But in the law’s 46-year history, Congress has never come close to that level regardless of which party has had control.

“After the past year and a half, if we can’t put this on our agenda I don’t know when we can,” said David Flink, CEO of Eye to Eye, a nonprofit that pairs high school and college students as mentors with middle schoolers who have learning disabilities. 

‘Broken the bank’ 

A sizable increase in federal funding would address the multiple challenges that have strained district budgets in recent years, said John Eisenberg, executive director of the National Association of State Directors of Special Education. 

In addition to shortages of special educators, and professionals such as speech, occupational and behavioral therapists, there is a growing population of students with complex needs. Since 2000, have almost tripled, according to the Centers for Disease Control and Prevention.

“The rise of autism in many of our states has broken the bank,” Eisenberg said, adding that districts use local funds to make up the gap and have even asked county and city governments to . 

Some students, like those with dyslexia, need specialized instruction, Eisenberg added. “People who are fluent in those techniques are not cheap.”

Mason, who held a job fair this week in Twin Falls to help fill over 20 open positions for paraprofessionals — and has been using relief funds to offer $1,000 bonuses if they stay all year — said the word shortage doesn’t aptly describe the situation. 

“I think we’ve been in an actual special education staffing crisis,” he said. “I’m really worried about next year. How do we provide services to kids if we can’t get people?”

Not enough teachers want to go into the field, he said, and those already working in special education say they often lack support to do their jobs well. In a , conducted by the Council for Exceptional Children, a sample of more than 1,450 special educators identified smaller classes or caseloads and less paperwork among the resources they needed most.

District leaders are now seeing the impact of the disruption in services. Tobin Novasio, superintendent of the Lockwood School District in Montana, outside Billings, said some students missed out on early intervention before kindergarten and now qualify for special education services for behavioral issues and other needs.

At the district’s primary school, which serves pre-K through second grade, “we don’t have one kid that’s had one year of normal school,” he said. 

According to a from The Education Trust, an advocacy group, 15 states saw a decline in early intervention service rates for Black children, those in low-income homes or those whose parents are not proficient in English. These services can address developmental delays and prevent students from needing special education in K-12.

‘Its fair share’

In Washington, meanwhile, a special ed funding increase is still possible this year, but is “highly unlikely to be at the levels proposed by House or Senate Democrats,” said Sean Worley, a senior policy associate at EductionCounsel, a consulting firm advising districts on policy and legal issues. 

Notably, a boost in funding for special education was one of the few issues Democrats and Republicans seemed to agree on during budget hearings earlier this year. 

When U.S. Secretary of Education Miguel Cardona in May before a House Appropriations subcommittee, ranking Republican Rep. Tom Cole of Oklahoma said while the proposed 41 percent increase in funding for the Department of Education would “leave the next generation saddled with the highest national debt our nation has ever seen,” he was pleased to see the recommended increase for special education. 

“We know the federal government has not upheld its fair share of responsibility for ensuring that education is provided for students with disabilities,” he said.

Republicans also expressed concern that interfered with services for students. in March that they were “particularly disappointed” that the Biden administration wasn’t “forcefully recommending” that schools open.

Over the more than four decades since IDEA passed, there has been an “annual grind to eek out” incremental increases through the appropriations process, said Noelle Ellerson Ng, associate executive director for advocacy and governance at AASA, the School Superintendents Association. Those increases usually receive bipartisan support, but they haven’t kept up with inflation and in special education, she added. 

Democrats in both chambers reintroduced the IDEA Full Funding Act in November, which would require Congress to increase funding each year until it reaches the 40 percent level. 

Republicans haven’t signed on to that . The last time full funding got GOP support was in 2019, when Kansas Sen. Pat Roberts supported before he retired. 

Federal funding now covers less than 16 percent of districts’ special education expenses, with the government’s share reaching its highest point at 18 percent in 2005, Ng said. 

For parents, full funding “would mean that school districts would truly offer all the services and supports that a child needs instead of trying to put a cap on hours or diverse programs available to that child,” said Lisa Mosko, who leads the special education task force for Speak UP, a Los Angeles parent advocacy organization. “It would also have a cascading effect to general education because special ed programs in districts often dip into the general ed budget to cover costs.”

With schools now trying to address a backlog of evaluations and services for students, some states aren’t waiting for Congress to act on Biden’s funding proposal. New Jersey’s this year includes $125 million in additional funds for special education. increased its budget for special education by $656 million and set aside $550 million in one-time funds to resolve disputes between districts and families who say their children didn’t receive necessary services during school closures.

Mosko, with Speak UP, sees problems with the alternative dispute resolution fund.

“Scores of districts around the state got behind this effort because of the messaging ‘spend money on kids, not lawyers’ sounds so compelling. The reality is that it hurts kids whose parents can’t afford a lawyer,” she said. Fully funding the special education law, she said, “would mean less 
 spent on legal fees because fewer families would have to litigate to access what IDEA guarantees.”