Nellie’s son loves most animals, except for goats — he says they have evil eyes — and the catfish that lives under the family’s deck — it’s evaded his grasp despite him using the stinkiest bait. He drags his mom to meet any dog he sees.
She said her 13-year-old is a “little nerd,” and loves to play video games with his friends.
He has autism, and when he’s anxious or overstimulated, Nellie says he pulls his hair out, picks at scabs and otherwise self-harms. Near the end of 2022, she noticed he was also picking at the skin around his ear. KCUR is not using several parents’ last names in this story because they are worried about people identifying and harassing their children.
When she asked him what was going on, he mentioned being put in his school’s recovery room “all of the time.”
He was in sixth grade at the Russell Jones Learning Center, a specialized school in the Park Hill School District where a team of school professionals can decide to send a student when “the student has exhausted the continuum of services available at their home schools.”
Most classrooms have curtained-off spaces that teachers use to remove students from stressful environments and calm them down. But her son was describing a recovery room, which at Russell Jones is the size of a typical classroom and contains two smaller rooms with large pads bolted to the walls. The doors are closed with a magnet lock, so once someone is inside, another person needs to slide the magnet to let them out.
School administrators say the room is only used if a student is so dysregulated that they could harm themselves or others. The lock requires an adult to keep their finger on it so students will stay monitored.
Her son never exhibited those behaviors, Nellie said. He falls asleep when he feels stressed or overwhelmed. Nellie said her son was placed in one of the smaller rooms within the recovery area. Her son said staff wouldn't always shut the door or lock it, but he couldn’t leave and didn’t know when he would be allowed to return to class.
By January, Nellie’s son was failing classes. During a meeting to discuss his issues, she asked school personnel why they were using the room, she said. Up until that time, no one had informed Nellie they were putting her son in the recovery area.
Staff members who might use seclusion or restraint must take mandatory training on de-escalation techniques, according to Park Hill officials.
Nellie said school officials told her they used the room because her son didn’t like it. They thought putting him there would encourage him to stay awake and keep him away from another student he butts heads with.
“No,” she told them. “It's not what it's for.”
The Park Hill School District has top-ranking academic programs and state-of-the-art school buildings. Its tax base has been steadily growing as its property values and population increase, and the median household income is more than $100,000. In 2022, voters approved a $137 million bond measure to build its twelfth elementary school and support other renovations. A school district spokesperson repeatedly noted that it’s considered a destination for students with disabilities, and it touts those programs on its website and social media.
Special education advocates said Park Hill is one of the better districts at meeting student needs – and some families do feel supported. But some students’ negative experiences reveal the challenges of meeting the federal mandate to support and educate students with disabilities in even the best-resourced districts.
Complaints range from frustration about missed academic opportunities to accusations of outright mistreatment. Parents have filed complaints with the federal Office of Civil Rights and repeatedly emailed teachers and administrators with concerns.
The 1975 federal Individuals with Disabilities Education Act, or IDEA, says children with disabilities must have access to a “free appropriate public education” alongside their peers in general education as much as possible — usually referred to as the “least restrictive environment.”
Kelli Johnson, herself the mother of a child with Down syndrome, helps Kansas City area parents navigate Individualized Education Plans and advocate for their children to get accommodations like extra time on tests, de-escalation plans in case of a meltdown or whatever other structures the student needs in place to navigate school with their disability.
“The districts are responsible for making sure parents know their rights and know the processes and know what they can and can't ask for,” Johnson said. “Districts just aren't doing it.”
Park Hill has 2,000 students with Individualized Education Plans, a federally-required document that outlines what specialized instruction a student with disabilities will receive; or 504 plans, for students with a disability that does not require special education services but calls for other accommodations.
Kelly Wachel, Park Hill’s chief communications officer, said the district goes above and beyond to serve those students.
“There always might be outliers who have other complaints or concerns that involve their students individually,” Wachel said. “We want to visit with those families, we want to address their concerns.”
Misty Stacy, whose son is a rising freshman with autism and complex medical needs, said his teachers have been good about keeping in regular touch with her about how things are going. Her son uses an assistive communication device, and he was part of a study Park Hill joined to pair kids using those devices with their mainstream education peers so they could connect, play and share.
“I will say every teacher that my son has had over the years has been exceptional at managing me and those needs that I have to feel good about the level of education and care he's getting overall,” Stacy said. “There are a couple of things that I would love to see Park Hill do a little differently over the course of the years.”
Park Hill acknowledged that it has room to improve for other students, though. Last spring, it created a new community council that lets parents talk directly to administrators about what’s working well in the district and what needs to be improved. It held its first meeting in April and will have more in the next school year. The district also hired a new director of special services, Adrianne Kelly, who has experience in special education.
'We're the school district, you're the parent'
For Nicole, whose 16-year-old daughter has Down syndrome, it’s been a battle since she tried to enroll her daughter in preschool in 2011. Park Hill had a part-time option for children with disabilities, but Nicole had to push repeatedly for the district to give her the full-day slot the family needed since both she and her husband worked full time.
In kindergarten, she wanted her daughter placed in a general education classroom, but district officials insisted on placing her in a self-contained classroom for students with disabilities without ever meeting her, Nicole says. Children in that classroom learned “essential skills” like brushing teeth and folding laundry instead of grade-level lessons, and only spent recess with their general education peers.
Her daughter’s learning regressed, Nicole said, and it felt to her that the school district never expected her child to achieve much.
In 2015, she arranged to have a Down syndrome expert shadow her child during first grade to see how teachers could better support her. The district countered with its own observer. Both concluded that the student didn’t need to be in a self-contained classroom, Nicole said.
Heather King, the district’s process coordinator for special services students, said many students in specialized classrooms are behind academically and may need to learn daily living and adaptive skills in addition to academics like reading and math.
When students enroll at Park Hill, King said the school evaluates them to see what services they are eligible for and set goals for their learning. Those initial evaluations and IEP meetings determine the best learning environment.
“We always want to put a student in the least restrictive environment, but we need to balance the students’ needs with the supports that they can receive in each of our environments,” King said.
University of Kansas social work professor Jennifer Kurth studies parent involvement in IEPs, and found parents only talked about 13% of the time in those meetings. When parents did speak up and ask for services for their student, those goals weren’t included in the finished IEP about a third of the time.
“They are the people who know their child best; they know that child better than anybody else at the team,” Kurth said. “They see them morning, noon and night, over many, many years, and they have a real interest in what that life looks like after school.”
She said school professionals do bring necessary knowledge on instructional strategies, but have different priorities.
King said sometimes parents and school officials disagree on what methodology is best for a student, but it’s ultimately up to the team of school professionals to decide.
“Parents always have a voice, that doesn't necessarily mean they are the only voice. Sometimes that does cause some hurt feelings, or some unhappy members of the IEP team,” King said. “But ultimately, it is our goal to do what's in the best interest for our students, and hear everyone's voice as part of that team.”
Nicole has pushed for changes beyond academics, too. She attended a first grade award ceremony and realized her daughter wasn’t on the stage. Instead, she was alone with a teacher in an isolated classroom.
“I was in tears. Because I had been had, they pacified me,” Nicole said. “They were still screwing my kid over.”
When yearbooks were published at the end of the school year, children with disabilities weren’t included in pictures with their general education classmates. She asked the school district to integrate students like her daughter in the next year’s edition.
They didn’t, and that was a breaking point for Nicole. She began gathering evidence for a civil rights complaint.
After an investigation, the Office of Civil Rights stated that Park Hill admitted no wrongdoing but offered a remediation plan – students with special needs would be included in yearbooks, assemblies and at lunch tables with their peers.
“I was told verbatim, ‘We're the school district, you're the parent. You decide what happens at home, and we decide what happens at school,’” Nicole said. “The part where they screwed up was they didn't realize that I was born to raise this child.”
Nicole said her daughter’s education went mostly smoothly in the later years of elementary school and through middle school. Her daughter was looking forward to a high school experience like she watched in the “Alvin and Chipmunks” movie.
Nicole was afraid those dreams might be shattered when she saw a post on the district’s Facebook page spotlighting the special education program at Park Hill High School. Nicole said the post showed students with disabilities taking classes in the school’s basement, far from the general education students.
Nicole pushed for more inclusion before her daughter attended high school. Eventually, she met with the then-superintendent, and two classrooms moved upstairs before her daughter started high school.
Park Hill officials said all students at Park Hill High School have classes on both the lower and upper levels, and that students of all abilities have the opportunity to take almost all courses offered.
Dr. Belinda Karge, a professor at Concordia University Irvine who wrote a book about how school leaders can create an inclusive environment for students with disabilities, said inclusive schools look like any other classroom where children with disabilities and their general education peers interact, engage and learn together.
“That's really our goal when we start thinking about inclusion -- we want kids to feel accepted, and we want parents to feel like the children are accepted,” Karge said.
Karge said all children learn kindness, mindfulness and understanding each other's differences in inclusive environments. Research shows inclusive classrooms improve social and academic learning for all students.
She said schools sometimes say they do not have the building space or staff to create inclusive classrooms, but that she has seen schools who have found creative solutions. She said even schools with limited funds can find ways to train teachers and support them in managing a classroom of diverse needs.
“You don’t need a whole bunch of extra stuff to make that happen,” Karge said. “What you need is staff who understand and have, through professional learning, have built systems in their own classroom and in their own teaching that allows for students with unique needs to be supported.”
A wide range of needs and limited resources
Schools have to serve a wide range of special education needs with limited money and staff. Under the IDEA, the federal government committed to pay 40% of the cost of special education in public schools — but the closest it’s come to that promise was 18%. Current federal funding covers less than 13% of the infrastructure, specialists, curriculum and supports schools require to serve their disabled students properly, according to the National Association of Elementary School Principals.
Kurth, the KU professor, said that can create a gulf between what families want for their kids and what schools can provide on a day-to-day basis.
“You don't go into school and teaching and administration because you want to hurt kids, or families,” Kurth said. “They are operating in an often broken system without enough money, without enough resources, and so people have to make hard decisions.”
In Park Hill, Wachel said federal funds — about $2.9 million for the district —do not come close to meeting the cost of educating its students who need specialized instruction. The district spends an additional more than $15 million on salaries, transportation, materials, supplies, training, assistive technology and more from district resources to meet the mandates of IDEA.
Wachel said the district will spend whatever it takes to meet students’ needs.
“We rarely, if not at all, measure optimal education against cost,” Wachel said. “Particularly, we can spend in excess of $100,000 for an individual student, if the service is merited. By law, we're required to offer services that will help students make progress towards those IEP goals.”
Parents feel like they face a “giant” going against the school district
For parents, school can be a black box. They know their child’s teachers and general schedule, and they know the parameters of their child’s IEP, but they don’t know how that plays out each day.
For parents of children with disabilities, who have seen their kids struggle in a society that wasn’t constructed to meet those needs, it can be particularly stressful.
After Nellie found out her son had been placed in a seclusion room at Russell Jones, she pulled him out of school for eight days and told teachers that she would bring him back only when he felt safe. Nellie asked for another meeting to discuss the use of the room. During that meeting, a staff member mentioned that her son threatened at school to kill himself.
Nellie blamed the room for his mental stress and thought the school had waited too long to tell her about her son’s talk of suicide.
“I was livid,” Nellie said. “How dare you? How dare you play with my son's life that way?”
When a student makes a suicidal threat, Wachel said a mental health professional — like a school nurse, social worker, or counselor — meets with and assesses that student. Then, they notify the parent and may refer the student for outside treatment or call a hotline if they have a significant safety concern.
Nellie pulled her son back out of school and again went to the school district administration with her concerns. She says administrators told her that she needed to move forward from the incident.
Kurth, the KU professor, said parents worry that if they push back too hard, they’ll be labeled hard to work with, and won’t be as successful in advocating for different or additional services they think their child needs.
“They've created plans, and you're supposed to show up and agree to it and if you don't, you're positioned as being difficult parents,” Kurth said. “They worry about the consequences to their child, ‘If the school doesn't like me, are they going to be difficult with my child?”
Both Nellie and Nicole acknowledge that they’ve developed an adversarial relationship with the district, but said they tried to work with staff members and administration first by bringing up existing policies or raising concerns.
Nellie eventually obtained emails from her son’s teachers through a records request, and said it’s hard not to read them through “shit-colored glasses.” After meetings where she felt her concerns went unheard and her son’s eventual mental health crisis, she said it’s hard to feel like she ever had a partnership with the school.
Nicole said tension began when she started pushing at IEP meetings for her daughter to be included with her general education peers. She feels like many times, the district flattened her daughter down to her diagnosis, instead of looking holistically at what she’s capable of, when it set goals and practices in the girl’s IEP.
“We are in such a vulnerable position and going up against a giant like Park Hill School District,” Nicole said. “A lot of people are not going to do it.”
Misty Stacy moved into Park Hill’s boundaries before she had children, unaware of the school district’s reputation. But she said it was sheer luck that it had a regarded special education system when she had a child with autism and complex medical needs.
She said her experience with the school district has been positive, but said it’s easy for educators to get defensive if parents come in “guns blazing.”
When her son was first diagnosed, Stacy said someone told her she would catch more flies with honey than vinegar.
“Teachers do see a lot of kids,” Stacy said. “I'm the expert on my kid, but they're the expert on kids and the education system, so there has to be a common ground there.”
She said she’s had concerns before about her child’s education and asked for changes, but said educators always did so. Stacy credits this to having a reputation as a “great parent to work with.”
Still, there are some areas where she believes the district can improve. Like Nicole, she wants to see the district better integrate students like her son with their general education peers in as many classes as possible, not just elective classes like art and gym or at lunch. She also thinks the district could collaborate more with outside companies to begin behavioral therapy for students at a younger age.
Nellie said she feels like her son has faced consequences because she’s pushed so hard.
Nellie’s son told her teachers dumped him out of his chair when he would sleep during class. In emails obtained by KCUR, an administrator described one incident when a teacher moved his chair away from his desk because he would not engage in or move when classes were over, and he fell out. A class aide also emailed the homeroom teacher to say another class aide grabbed the back of the boy’s chair when students were lining up to leave class, and she was worried he had been trying to dump the boy out of it.
“Why does he think it's okay to do that?” Nellie said.
Wachel said the district cannot speak to specific incidents because of student privacy law. She said that type of concern would be escalated to district officials who would meet with staff to hear multiple accounts of what happened. Based on a description of the event, Wachel said “there are multiple perspectives around what happened and that we actually might disagree with some of the accounts.”
“Every parent’s worst fear”
Nicole’s relationship with the district deteriorated even further after a substitute bus driver left the girl at the wrong bus stop on April 13, 2023.
“My kid was gone. I think that's every parent's worst fear. My thought was ‘What's happened to her right now?’” Nicole said.
Nicole said a video she saw later showed bus drivers asking her daughter where her route was, but the girl couldn’t answer directly. Eventually, the drivers saw her daughter respond when she saw a friend’s house, so they dropped her off there.
The drivers didn’t check to see if a guardian was at the residence, Nicole said, and her friend’s mom was doing yard work in the backyard. She said it was roughly 45 minutes before anyone knew where her daughter was.
Nicole said she was emotional when she arrived to collect her daughter. The first person she encountered was a school district employee, who immediately told her the mixup wasn’t the district’s fault.
The situation ended with a police officer threatening to place Nicole in handcuffs because she yelled at the school employee.
She says the incident confirmed how little society – and the school district – care about people with disabilities.
“Probably the worst day of my life,” Nicole said. “Actually, no. It was the next day when I realized nobody gave a s---… that it was okay to do that to my kid.”
Wachel said the district is aware of the incident last spring. If students are dropped off at the wrong location, Wachel said the district is made aware and works quickly to ensure students are safe and make it to their correct location.
She said the district worked with its transportation team to make sure the right procedures and protocols are in place so it doesn’t happen again. It is also standard practice for a district employee to go support the transportation team, Wachel said.
Fighting at every turn
Susan’s family moved into the Park Hill School District in 2010, when her daughter was in fifth grade. In middle school, a team of educators told her mother that the student, who is Deaf, couldn’t understand basic signed words like “cow” and “dog.”
The assertion stunned and infuriated Susan. She went home and made a video of herself signing words to her daughter, who matched each one to a corresponding card. Susan showed the video to the school’s team, and said they could no longer ignore that her daughter could learn sign language.
Susan said her daughter’s school career has been riddled with similar experiences.
Her daughter, now 22, is Blind-Deaf and has cortical visual impairment — a disorder where the brain struggles to process what the eyes are seeing — and other complex medical needs.
At the end of her daughter’s eighth grade year, the school agreed to enroll Susan’s daughter in the Kansas School for the Deaf in Olathe. Susan said her daughter blossomed there. It was easier for her to focus in a smaller environment. Since everyone signed to communicate, her daughter always had access to sign language.
Five students in Park Hill attended specialized out-of-district schools, paid for by the district, because it doesn't have the resources to meet their needs. She said the district can pay up to $115,000 a year per individual student for outside specialized schooling.
During her sophomore year, a Kansas School for the Deaf employee recommended that Susan ask her daughter’s doctor if she qualified for deaf-blind services. The doctor said she had always been eligible. Susan says she doesn’t understand why the district didn’t refer her to more services.
“You have to ask the right question at the right time to the right person,” she said. “And if you don't meet those parameters, you're not going to get to where you need to be. That's such a responsibility you hold as a parent, and I felt such guilt for not following those three things.”
A blind-deaf diagnosis opened the door to federal grants and services, and allowed Susan’s daughter to get an educational experience better created to meet her needs.
“If we could have started sooner, there's no telling what progress we could have made,” Susan said.
King said there is a difference between a medical diagnosis and eligibility for services, which are determined by state standards. The district identifies what a child qualifies for through their initial evaluation process, where team members will look at medical diagnosis, assessments, and observations.
The district doesn’t refer students to medical professionals for a diagnosis, but King said a teacher or principal can notify families if they observe that a child has needs that should be explored further.
Susan and her daughter attended a week-long immersion program where she learned to use a mobility cane in January of her senior year. Her daughter was back at Park Hill High School for that year, and stayed there until she fully aged out at 21. Susan was excited to think of the girl confidently walking through school rather than navigating the hallways with her hands on the lockers.
But she says the school district stalled on her request to train and provide her daughter with a cane until the last week of her daughter’s 12th grade year, and then denied it. One of the staff members who rejected the services said her daughter would hurt herself with the cane.
Susan once again marched into school with a video, this one showing her daughter successfully using the cane. Administrators finally granted the request —18 months after Susan initially asked.
She wonders why it took so long to get the services her daughter needed, and why she had to fight at every turn.
Johnson, the advocate for families of students with disabilities, said school districts across the country struggle with that task, in part, because the education system was not built to serve students with disabilities. For decades, many were institutionalized, not placed in learning environments.
She said districts are now slowly catching up, but school leaders often lack a personal or professional background in special education or disabilities. Johnson said they may have different priorities, or fear backlash from other parents who worry more resources put towards special education will lead to fewer for their own children.
“I think it's the path of least resistance, and do I really want to put that much fight in?” Johnson said.
Cautiously optimistic for change
Going into this school year, Nellie told her son’s IEP team she didn’t want him secluded unless he was a physical threat to himself or others. She also asked one of the team members, a teacher at a general education school in the district, what would happen to her son if he fell asleep in one of his classes.
She was told her son would face natural consequences like missing out on that day’s lesson or having to ask a friend for notes.
The first weeks back to school went well. Nellie’s son was able to work more with teachers he previously had a positive relationship with. At times, she would receive calls from her son and his teacher, who would allow him to be silly and pretend to order food from her.
He now spends half his day at Congress Middle School, transitioning into a general education setting. He has an aide he feels safe with, but still sometimes worries he’ll be isolated away from his classmates room if she’s gone.
Nellie and a group of parents formed an advisory PTA committee for Park Hill families with children in special education to have a “bigger voice” in the district and let administration know that their experiences aren’t isolated.
“Lots of us are not happy. Lots of us are not getting what we need,” Nellie said. “Our kids are not being supported, and the staff that is trying to care for our children and take care of our children are also not being supported.”
After a district representative attended one of their meetings, Nellie said it launched a Park Hill Special Education Community Council for staff and administrators to hear directly from families.
The Park Hill School District isn’t an outlier in its issues with special education, said Johnson. She said it’s one of the better school districts that she’s worked with.
“Which is why I personally moved into this district,” Johnson said. “I knew that I could advocate and do what we needed to do.”
But she’s long pushed for administrators to listen to parents’ voices.
Several states legally require school districts or regions to have a council or platforms to meet regularly with educators about their experiences in education. In Pennsylvania, a 1972 lawsuit resulted in an agreement to create 29 local task forces across the state. Those councils can include educators and professionals, but parents must make up 51% of membership.
Missouri has a state Developmental Disabilities Council that requires 60% of its membership to be made up of individuals with disabilities and family members, but individual school districts aren’t required to make similar councils.
In an inclusive setting, Karge said schools regularly communicate with parents. But she said some parents enter a school district after bad experiences elsewhere, which can bring friction.
She said teachers and administrators need to start with a clean slate and the assumption that they’ll be working together as a team with families. Karge said that includes giving parents the time to share their educational experience without judgment.
“Make sure the parent knows you heard them, and then let's make sure somebody's taking notes and let's make sure that doesn't happen in our district,” Karge said.
Some families, like Nicole, aren’t confident that the district will use what it learns on the council to improve how it serves students like her daughter.
“I'm tired, I go through their channels and I try to do things the right way and it still gets me nowhere,” Nicole said. “I'm not going to take the time to go sit in a room and get pissed off hearing how other children are being treated just for nothing to come of it.”
Others, like Nellie, are cautiously optimistic, and see it as a positive step forward.
“Please, please, please, if you say that you're going to help, if you say that you're going to do this, please just follow through,” Nellie said. “None of us are asking for special treatment. We just want to level the playing field here -- that's all that's all that we want.”
