Just one month before her 14th birthday, Arrington Payne’s uncle—with whom she had a very close bond—was gunned down on the west side of Cincinnati. His murder left the teen grief-stricken and deeply distraught.

One Sunday shortly afterward, Payne’s body suddenly began jerking uncontrollably about an hour into the morning sermon at her church. She briefly lost consciousness.

After nearly a year of experiencing several more similar episodes, Payne learned that she was having nonepileptic pseudoseizures or “events,” brought about by conversion disorder: a condition in which an individual experiences shaking, blindness, paralysis, or other nervous system symptoms that do not have a physical cause. Payne’s doctors believe that her disorder is linked to post-traumatic stress disorder as a result of her uncle’s death.

Since that day, Payne, now 17, has had countless events. They range in severity from moments of blank staring to violent jerking spells that have caused her to fall and sustain serious injuries. At times, Payne may have up to five events in one day.

“I miss school a lot just because my [events] are so frequent,” Payne said. “If I have one in the morning, it’ll keep me from going to school because I’ll be too tired.” Payne has suffered multiple concussions and other injuries—including fractured bones—as a result of falling during her shaking spells.

Because of her condition, she requires accommodations to her learning environment at the School for Creative and Performing Arts (SCPA), located in the Over-the-Rhine neighborhood of Cincinnati. SCPA is part of Cincinnati Public Schools (CPS), the largest public school district in the Cincinnati metropolitan area and the third-largest in the state of Ohio.

A letter penned by a pediatric psychologist on behalf of Payne in 2015 explains how her events “often resemble epileptic seizures, but they lack the characteristic clinical and electrographic features of epileptic seizures.” The psychologist goes on to describe how the events alone “do not require medical attention,” but advises that the “events need to be taken very seriously.” She also mentions “it is extremely important to realize that Arrington is not ‘faking’ these events.”

Still, Payne told Rewire.News that teachers, administrators, and other school staff continuously downplay her disability, though she has presented extensive medical proof that it impedes her ability to learn.

As outlined by federal law, children with disabilities like Payne are guaranteed equal access to public education and school services. They can either receive individualized education plans (IEPs) through the Individuals with Disabilities Education Act (IDEA), or—like Payne—seek 504 plans under Section 504 of the Rehabilitation Act of 1973.

Both policies require public school districts to provide a “free and appropriate education,” often referred to as FAPE, to all children with qualifying disabilities who live within district lines, irrespective of the nature or severity of a child’s disability. The policies also include access to the “least restrictive environment” (LRE) for students with disabilities as a guiding principle. For IEPs and 504 plans, the impetus for an evaluation is usually a request by a parent or a recommendation by a teacher. School psychologists and specialists will generally do their own evaluations of a student, but having outside medical documentation of a disability or a doctor’s recommendation certainly helps prove a child is in need.

The doctor who wrote the letter in support of Payne’s 504 plan in 2015 wrote that “there is high probability that [the events] will significantly decrease or stop [altogether] if properly treated,” and that “effective treatment will take the concerted efforts of Arrington’s doctors, counselor, parents, and school personnel.” Her letter expresses that “the guiding theme of effective treatment is for [Payne] to be treated compassionately.”

But Payne claims this has not been her overall experience at SCPA. Her teachers, she says, are not always understanding of her circumstances and the absences they cause. Consequently, her grades have suffered.

“I’m taking all advanced classes and I’m doing the best I can,” said Payne, who is now a senior. “I can see it in my teachers’ eyes and in the way they talk to me that they don’t want to see me succeed. They put barriers up and make things harder for me than they would for the next person.” One of Payne’s friends also described to Rewire.News incidents in which school staff would accuse Payne of “faking” her events.

Payne’s mother, Lekita Balderos, says that when she presented the issue to school administrators, her concerns were brushed off. In addition to being misunderstood by school faculty, Payne alleges she was once physically assaulted by a history teacher in 2016, as a ninth grader.

Balderos, who herself works with children with disabilities, says she tried to file a police report with the Cincinnati Police Department, but was instructed to file a report with the SCPA school resource officer instead. She provided Rewire.News with a copy of the report, which alleges the teacher in question grabbed Payne’s “upper arm area with aggressive force” and shook her while yelling at her, causing her to have an event.

“He took the information and told me that it may take several weeks, but that we would be hearing from someone about a court date,” Balderos said of the report she gave the resource officer. Four months later, after reaching out repeatedly, she learned the case had been closed and dismissed.

In Payne’s eyes, this is not “appropriate” education as outlined under Section 504. She isn’t alone: Rewire.News interviewed more than a dozen students and parents of students with disabilities who live in the Cincinnati Public Schools district. Their struggles with having disabilities recognized and accommodated have been problematic and at times, apparently in violation of federal law. CPS officials declined to comment to Rewire.News on matters pertaining to individual students, citing the Family Educational Rights and Privacy Act.

Payne recalled a period during which she was temporarily deaf after having a serious shaking spell in 2015. Soon after she lost her ability to hear, Payne sat in a meeting with an in-school social worker and the school principal to discuss updating her 504 plan. Payne says the social worker requested the school provide her with an interpreter, which would make communicating with her teachers less burdensome.

Although she couldn’t hear, Payne said she could still read lips and felt invisible when the principal made a remark he assumed she wouldn’t catch.

“He said that the school couldn’t shell out money just because a kid is emotional and chooses not to hear,” Payne said. She later confirmed what the principal said with the social worker, as they reviewed notes from that meeting together. The social worker did not respond to Rewire.News’ request for comment; school officials declined to answer any questions about Payne’s allegations and referred Rewire.News to CPS’ media relations department.

Ultimately, the school did not provide her with an interpreter.

A “Free and Appropriate Education”

Though both IEPs and 504 plans are designed to protect the educational rights of students with disabilities, there are notable differences in how each is implemented.

Procedural requirements for IEPs under IDEA are very specific about who should be involved in the planning process: a parent or guardian, at least one general education teacher, one special education teacher, a school psychologist or other equally qualified clinician, and a district representative who oversees special education services are all required to be present. IEPs must be reviewed annually, but they may be reviewed more frequently if a parent or any other members of the IEP planning team request as much.

504 plans, however, do not legally have to come in the form of an official, written document. Thus, there are no procedural requirements for who is involved in the 504 planning process. All districts that receive federal funding are required to employ at least one 504 coordinator, though, who is responsible for ensuring that the district is complying with Section 504 regulations. The law only requires “periodic re-evaluation” of plans, which is usually every three years.

IDEA is strictly an educational policy, while Section 504 is recognized as a civil rights law that works in tandem with the Americans with Disabilities Act.

Neither IDEA nor Section 504 mandate that specific services or accommodations be assigned to students on the basis of a specific disability, as a rule. However, educators are tasked under both laws with implementing plans that promote the standards of FAPE and LRE for children who qualify. With regard to IDEA specifically, in the 2017 Endrew F. v. Douglas County School District case, the U.S. Supreme Court ruled that a “free and appropriate education” includes well-founded goals for a student’s educational progress.

IEPs facilitate both modifications—or customized changes to a curriculum—and accommodations, defined as adjustments to one’s learning environment. 504 plans are only intended to provide accommodations.

Another distinct difference between IEPs and 504 plans are their respective standards for eligibility. For a student with a disability to be eligible for a 504 plan, they must have a “physical or mental impairment which substantially limits one or more major life activities” and have “a record of such an impairment” or be “regarded as having such an impairment.”

The disabilities eligible under IDEA are generally covered by Section 504, but not all disabilities covered under Section 504 are covered by IDEA. The 13 disability categories covered under IDEA include specific learning disabilities, autism spectrum disorder, intellectual disabilities, deafness and other hearing impairments, orthopedic impairments, and emotional disturbances among other disabilities. However, having a disability under one of those 13 categories alone isn’t enough to qualify: A child’s disability must require them to need specialized instruction and/or services in order to make progress in school.

This is the case for Cillian Carlson, a Cincinnati student who has been diagnosed with borderline autism spectrum disorder (ASD), attention deficit hyperactivity disorder, and Ehlers-Danlos syndrome (EDS): a group of connective tissue disorders that causes bearers to injure easily and may come with psychological symptoms, including anxiety.

After weighing several school options within the Cincinnati Public Schools district for her son, Cillian’s mother Melanie Carlson settled on enrolling him in Silverton Paideia Academy for kindergarten in 2015. Silverton is a preschool-through-sixth grade magnet school that boasts a “museum model” curriculum, or curriculum that engages students in exploration and discovery activities and the creation of projects.

Carlson and her husband, Sean, believed the museum school model would be beneficial for Cillian. However, warning signs that Silverton was a less-than-ideal environment for their child began to emerge soon after he started kindergarten.

“Cillian was coming home and saying things like ‘[my teacher] was mean to me,’” Carlson told Rewire.News. Then one day in January, the kindergartner came home crying about his interactions with his teacher. This prompted Carlson to schedule a string of conferences with her.

“She’d say, ‘Oh well, his behavior is terrible,’ and when I’d ask her what she meant, she couldn’t really tell me anything,” Carlson said of the meetings. And although Silverton had assigned Cillian a personal teacher’s aide as part of his IEP, nobody seemed to be able to give Carlson concrete details about her son’s in-class behavior. The aide would tell Carlson that everything was going great, while his teacher would continuously complain about him.

Carlson grew even more concerned when Cillian started failing spelling tests—tests she says should’ve never been given to him considering he couldn’t read at that time and had speech delays. Carlson says Cillian’s kindergarten teacher initially agreed to make the adjustments Cillian needed. But when Carlson requested his teacher give him extra time to work on the tests, she says the teacher refused.

“This is a kid with an IEP who is developmentally delayed and is still learning language,” Carlson said as she recalled the notes Cillian’s teacher sent home about him failing the tests. The Carlsons went into overdrive, creating a flashcard system in an effort to get Cillian up to speed on reading and spelling. But by then, the kindergartner—who had typically conveyed an eagerness to learn and work—had already developed anxiety surrounding his academic performance.

“He loves learning but all of a sudden, he became highly anxious and didn’t want to go to school anymore,” Sean Carlson said. Cillian would cry and apologize profusely anytime he made a mistake during their at-home spelling lessons.

Moreover, Carlson says she also learned there were days when Cillian was denied recess because he hadn’t finished his classwork, although his IEP asserts his need to have movement breaks.

Rewire.News examined Ohio Department of Education (ODE) records on district-wide disciplinary actions taken during the 2016-2017 academic year. We found that despite making up less than one-fifth of the CPS student population, students with disabilities were disciplined at a rate that was nearly 22 percent higher than that for students without disabilities. An ODE representative said that the “disability” condition noted in a ODE manual on the subject “describes the disability of a student at or below 22 years of age who has been officially identified with a disability by an ETR (Evaluation Team Report), an IEP (Individualized Education Program), and one of the valid disability condition options.” In other words, these students are covered under IDEA; the data set does not note how many students with disabilities using 504 plans were disciplined. The methods of discipline include out-of-school suspensions, in-school suspensions, in-school alternative disciplinary measures, and emergency removal by district personnel. A report released by the U.S. Government Accountability Office in March found that students in K-12 public schools with disabilities are disproportionately disciplined compared to their non-disabled peers.

Carlson went on to say that Silverton did not provide her with quarterly reports about whether the specific goals outlined in Cillian’s IEP were being met, despite the school being legally obligated to do so pursuant to section 3323.011 of the Ohio Revised Code. The law mandates that “a description of how the child’s progress toward meeting the annual goals described pursuant to [a statement of measurable annual goals written in the IEP] … will be measured and when periodic reports on the progress the child is making toward meeting the annual goals will be provided,” and that “such reports may be quarterly or other periodic reports that are issued concurrent with the issuance of regular report cards.”

After realizing more needed to be done for her son, Carlson turned to the district for help—and got no answer.

The Carlsons then consulted with a local attorney. He informed them that they were not legally required under Ohio law to have Cillian in school until age 6. They decided to pull Cillian out of Silverton six weeks before the end of the school year. It was only when she informed the district she would be homeschooling Cillian, Carlson says, that she received any response from its representatives.

Silverton representatives did not respond to requests for comment.

“When we stopped taking him to the school and would have to go up that way, he would start shaking and start freaking out,” Sean Carlson said. “He still talks about, ‘Am I ever going to have to go back to that school?’ whenever we drive by there.”

Anyone who suspects a local educational agency is in noncompliance with IDEA can file a written complaint with their state education department. However, only parents and legal guardians of students with IEPs can request a due process hearing, similar in nature to a court trial. A due process hearing would not yield any awards for damages, but if a parent wins against a district, they could be entitled to reimbursement for legal fees and vice versa. However, a parent could pursue a civil lawsuit if a due process hearing doesn’t resolve the issue. Additionally, parents may be entitled to having their child’s school district pay for an independent educational evaluation, or IEE, under IDEA.

The Carlsons ultimately did not file any official complaints, nor did they pursue legal action. But Rewire.News reviewed findings from the 36 resolved written special education complaints filed against CPS since 2008, which can be found on the ODE website. Most filings alleged numerous violations of IDEA and similar state-level special education laws, with nearly two-thirds resulting in the determination of one or more violations. Out of the three resolved due process hearings that occurred in the same time period, one determined that CPS was in violation of IDEA. ODE did not respond to Rewire.News‘ inquiries about how many IDEA complaints against CPS are still open.

By comparison, the next-largest school district in Ohio, Cleveland Metropolitan Schools (formerly Cleveland Municipal Schools), has only had ten written special education complaints leveled against it in the past decade, with nine of them resulting in the discovery of noncompliance.

When it comes to 504 noncompliance, meanwhile, complaints can be submitted directly to the U.S. Department of Education’s Office for Civil Rights (OCR). But advocates wonder how much longer OCR will be of assistance, given the Trump administration’s rollbacks on civil rights policy over the past year.

“In previous years, investigators were given the flexibility and permission to look into cases that might lead them to uncovering systemic issues in certain school districts,” Meghan Whittaker, policy and advocacy manager of the National Center for Learning Disabilities, said in an interview with Rewire.News. But recent changes to OCR’s case processing manual instruct investigators to review cases on an individual basis and throw out complaints that appear to resemble other complaints made in the past.

“I Had Issues From Day One”

OCR has nearly 3,900 disability discrimination cases open as of August 31. Six of the ones listed in its database are within CPS. However, a district representative told Rewire.News that there are only five open in reality and that one is a repeat of another.

Rewire.News found that the two complaints in question display the same date, with one addressing allegations of a “procedural requirement” violation of Section 504 and the other alleging a “disability harassment” violation by CPS.

The OCR website archives resolutions to complaints filed on or after October 1, 2013; it lists three resolved disability discrimination cases within CPS since that time, with two closed before an investigation was completed due to early complaint resolution agreements. The third case was fully investigated and resulted in a determination that CPS failed to uphold FAPE.

Whittaker says that it’s not uncommon for public school districts to have trouble implementing federal law when it comes to special education and disability rights.

“There are so many different levels that go from the federal law down to the state and district level,” she said. “So by the time schools are interpreting what the state has told them about how to apply the laws, there’s a lot of room for misunderstandings and miscommunications about what they should be doing.” Together, these factors create the perfect recipe for noncompliance.

Indeed, the legal and procedural nuances of developing and implementing IEPs and 504 plans often lead to confusion for educators and parents alike, who may not be thoroughly educated on the laws that back them. This, in conjunction with factors such as the misuse of support staff, the costs of special education services, and concern about district ratings has led to poor special education practices by Cincinnati Public Schools, according to a special educator for the district who has requested not to be named.

An IEP “is a pretty big document, and it’s difficult to digest as someone with no real training,” he said. “The problem with CPS is there’s no real training process to write IEPs.”

The problem, the specialist says, may also be traced back to poor preparation on the part of colleges that are sending special educators into the workforce. Research has also supported this.

“You don’t really learn anything about writing IEPs until you’re out on the job,” the special educator said about his college experience.

Cincinnati-based attorney Marcus Coleman was a substitute teacher for CPS from 2002 to 2007. He says he was thrust into the role of being a makeshift special education intervention specialist for two years, despite not being certified by the state.

“People make the mistaken assumption that special education is about behavior,” he said. “So if you are a person who can manage behaviors, [schools] assume that means you can be a good special education teacher—but it does nothing to further the education of the kids. What they need is a lot more complicated than that.”

When Rewire.News described the alleged treatment of students with disabilities by CPS schools to Coleman, who specializes in education law, he said, “It sounds like they’ve got violations all over the place.”

As an Ohio-based board-certified behavior analyst, Oascha Cross works with kids who have ASD, learning disorders, and other cognitive and emotional disorders. She told Rewire.News that she has encountered many public school teachers who are not equipped with the skills necessary to develop and implement specific, measurable objectives for students with IEPs.

“A lot of times teachers will write out goals and start trying to meet them without having the prerequisites,” she said. While Cross has not worked within the CPS district specifically, this is an issue she’s seen in various other public school settings.

Her primary duty is “to take a negative behavior and create an appropriate replacement behavior” for kids with disabilities, including learning disorders and emotional and behavioral issues. She creates detailed plans to teach kids the skills they need to thrive across all environments—home, school, and out in the community—after thoroughly observing them and reviewing data specific to their individual circumstances.

Cross is frequently present for IEP planning meetings conducted for the students she has evaluated. But there have been times when she’s been shut out of the process because certain educators view her as an outsider trying to dictate how they do their jobs rather than a partner in preparing students for successful outcomes.

Cassie Wolf described the difficulty she faced with getting her son, who has autism, an IEP through the district. Despite producing extensive documentation of his disability, “I had issues from day one with CPS,” she told Rewire.News.

The Child Find mandate of IDEA requires public school districts to identify, locate, and evaluate any children living in its jurisdiction, ages 3 to 21, who are in need of special education services. This applies regardless of whether or not a child attends one of the district’s schools. Wolf’s son, Ricky, was diagnosed at age 2 with pervasive developmental disorder (PDD), a former subtype of autism that was removed from the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM 5) in 2013.

In 2014, an IEP meeting was held on Ricky’s 3rd birthday. The district would not accept the PDD diagnosis for his IEP evaluation, so Wolf got a comprehensive evaluation affirming a new diagnosis of ASD for Ricky. However, the district claimed the neuropsychologist who evaluated him wasn’t an approved clinician by its standards.

“When I was fighting [CPS] about the diagnosis, we got into a lot of back and forth,” Wolf said. “I provided them with a lot of paperwork.”

The district’s guidelines at the time for the educational identification of autism were a medical diagnosis by a “qualified developmental pediatrician or child psychiatrist” in the form of a “written, explicit diagnosis of autism spectrum disorder” as seen in the DSM 5. According to an online listing, the clinician who diagnosed Ricky with ASD specializes in pediatric neuropsychology and child clinical psychology.

With the support of a second clinician and an advocate from the Ohio Coalition for the Education of Children with Disabilities, Wolf managed to get Ricky the special education services he needed for preschool in 2015—but only after he went weeks without. Wolf and the advocate drafted a complaint letter to send to the state but decided not to move forward once the district agreed to recognize his diagnosis. Because of her experiences, Wolf opted not to place Ricky in a CPS school for kindergarten.

CPS was rated as “meets requirements” in a comprehensive assessment of its special education performance by the Ohio Department of Education for 2017. However, the district was given an “F” for its overall progress component, which includes an evaluation of the progress a district has made for students with disabilities “as compared to the statewide expectation of growth” based on numbers it reported in 2017.

Kids with disabilities who don’t have a parent or guardian advocating for them fare especially poorly, according to the CPS special educator.

“If they know the parent is absent or not really involved with their kid, they’re going to push the envelope to see what they can get away with,” he said. And even the parents who do participate in their children’s education tend to place the onus for understanding laws and procedures on educators, giving way to accountability issues. This makes it easier, he says, for the district to take students off of special education services, or block their access, at its discretion.

A 2012 article written by researchers from the Hammill Institute on Disabilities reviewed nationally representative samples of students with disabilities to assess participation in and satisfaction with IEP planning meetings, on the part of parents and students. The article concluded that although federal legislation indicates an intention for parents and students above the age of 14 to be actively involved in the IEP planning process, “the federal intention is not being equally realized for students served under IDEA and their families.”

Rewire.News reached out to CPS for comment regarding its policies and practices relating to special education and disability laws. Director of CPS’ student services department Kevin Jamison spoke on behalf of the district.

CPS holds presentations at each of its schools with updated information for intervention specialists and related services personnel on a required, monthly basis, according to Jamison. He said the district also holds quarterly meetings with its 504 coordinators. Additionally, CPS collaborates with Cincinnati Children’s Hospital and the Kelly O’Leary Center for Autism to host special training sessions throughout the year for educators who work with students who have multiple disabilities.

Rewire.News also inquired about whether or not CPS is aware of any widespread or recurring complaints against it for failing to accommodate disabled students. Jamison said that it was not and that when issues do arise, the CPS student services department does everything that it can to rectify the situation. Additionally, teachers and support staff have access to a database wherein they can view individual students’ IEPs and 504 plans.

He went on to say that CPS issues a handbook to every parent of a student with an IEP that spells out procedural guidelines. He also responded to questions about the district’s history of being found in noncompliance with both OCR and ODE policies by stating that “the number of complaints [the district receives] on an annual basis are minimal in comparison to the number of students that [it serves]” and that the district is “very eager to resolve those complaints when they arise.”

CPS representatives did not respond to requests for comment regarding specific schools or alleged incidents, only citing district-wide policy on IDEA and Section 504 compliance.

Arrington Payne, for her part, says she’s just trying to finish her high school career strong. After taking medical leave from school in April, per her doctor’s recommendation, Payne spent the summer completing the 11th grade through home instruction and took introductory college courses.

Just one month into the new school year, though, she says she’s already facing the same kinds of poor treatment.

Payne told Rewire.News that she was kicked out of the school nurse’s office by an office aide after going there to prevent an event she felt coming on while attending a masterclass. She alleges she was instructed to call her mom to pick her up so the school wouldn’t be liable for any injuries she sustained. A family friend listed as an emergency contact picked Payne up, but not before she had an event that left her face down on the ground and initially, she says, without assistance from school staff. She had another event the following day after allegedly overhearing one teacher insult her to others.

In the first week of September, Payne’s mother filed a complaint against CPS with OCR on behalf of Payne for disability discrimination.

“I’m very numb because [staff members] keep doing these things and Arrington is doing her best to be there,” Balderos said. “And no matter what this child does, she gets slapped down. This is her last year and I just want her to have a good year.”

Payne says she’s determined to stick it out.

“If I leave now, nothing will change,” she said. “Other people with disabilities will have to endure the same thing I have. I want to make a change and the best way I see to do that is to stay and fight this battle.”