Kellen Hedler, 11, is outgoing and friendly. He dances with a hip-hop team and enjoys a variety of sports. Adaline Whitmer, 7, is lively but bashful. She’s starting to break out of her shell after joining a local gym’s cheerleading squad. Both Kellen and Adaline attend public schools in Oklahoma. They both have Down Syndrome.
Down syndrome is caused by chromosome 21 trisomy; it is one of the most well-known chromosomal disorders in humans. It affects most body systems, resulting in various clinical symptoms such as intellectual disability, small stature, flat face, flat nasal bridge, pronounced epicanthic folds, up slanting palpebral fissures, and a protruding tongue.
Down syndrome is also linked to a higher chance of developing other medical issues. Common comorbidities in individuals with Down syndrome include heart defects, sleep apnea, and leukemia. Individuals with Down syndrome have varying degrees of intellectual disability ranging from mild to severe.
Unfortunately, Kellen and Adaline’s experiences in school are very different. Adaline spends the majority of her school day in a separate class with other students with disabilities, rather than with her first-grade peers. Meanwhile, Kellen spends more than 80% of his day in a fourth-grade general education classroom, where he learns alongside his non-disabled peers.
Research shows inclusion improves Kellen’s chances of success. Disabled students who are included in general education classrooms have higher math and reading scores than those in segregated settings. They also have higher self-esteem, more social interactions and friendships, and better communication and social skills. Students like Kellen can benefit the most from inclusive classrooms according to Jennifer Kurth, a professor of special education at the University of Kansas.
For example, Thomas Hehir and his colleagues assessed the performance of almost 68,000 disabled students in Massachusetts in 2012. They discovered that disabled students who spent more of their school day with their non-disabled peers fared much better on language and mathematics tests than students with identical disabilities who spent a smaller proportion of their school day with their non-disabled peers.
Sadly, Kellen’s school experience is not typical of most students his age. Federal data shows that disabled students are increasingly being taught in general education settings. However, many students with specific disabilities, such as intellectual disabilities, continue to be educated in separate classrooms.
Many students are in situations like Adaline’s. Adaline’s mother, Kristen recalls the day she went to pick up Adaline from kindergarten, a little over two years ago. Kristen was in line with the other parents. “And I get a phone call and they’re like, ‘Where are you?’ And I’m like, ‘I’m in the car line, I’ll be there in a minute,’ y’know? And they’re like, ‘No no no, y’all go to the back of the building”.
Whitmer says she was surprised that disabled students were picked up in a different location than their nondisabled peers. However, she didn’t want to “pick a fight.” Disabled students don’t need to have separate pick-up areas.
Last spring, Kristen voiced her concerns to the school, and administrators informed her that parents can pick up students with disabilities alongside general education students. Bixby Public Schools, Adaline’s school district, tells NPR that parents have always had this option. And, while Kristen is now picking Adaline up at the front of the building, she believes this is just one example of Adaline’s segregation at school.
“I say segregated because it is segregated from the typically developing population,” Whitmer says. Adaline currently spends approximately 47% of her day in a general education classroom, a figure Whitmer hopes to see rise. “We want them to first look at our children as general education students,” Whitmer explains “Let’s start with the assumption that the child would be in general education 100% of the day, and then let’s figure out how we can support them there.”
Bixby Public Schools Superintendent Rob Miller told NPR in an email that the district shares this goal and disagrees “with the characterization that any child is being segregated based on their individual educational placement.” He further disclosed that they provide “a wide range of specialized services based on student needs and abilities, sometimes in special settings.”
Kristen and several other families in Adaline’s school district filed a complaint with Oklahoma’s State Department of Education last May. Among other things, parents said that their disabled children were being segregated. Additionally, they said that the district was denying their children access to the least restrictive environment required by federal law.
In its final report, the state said that it could not assess the district’s placement judgments for students, but it did require the district to reconsider each student’s least restrictive environment with parental engagement. It also instructed the district to conduct more staff training, among other things.
For the Whitmers and Hedlers, school inclusion is about more than simply academic success; it’s about developing real-life skills and relationships that their children will bring with them into adulthood. “Inclusion is important because we’re planning for their future,” says Kellen’s mother, Kristy.
I was fully included as a child. I attended public school from preschool to 12th grade. I went on field trips, narrated a play, and was invited to birthday parties. Outside of school, I took part in sports and went to summer camps.
I graduated from high school in 2018. Since then, inclusion hasn’t been talked about much. It’s as if society forgets about disabled people once they are no longer kids. For me, adulthood has been a lonely, isolating experience. I hope that as Kellen and Adaline grow up, they will still be included in their communities.
Sources:
Bader, Eleanor J. “Segregating Disabled Children from Their Peers Doesn’t Help Them, Advocates Say.” Truthout, Truthout, 13 Dec. 2022, https://truthout.org/articles/segregating-disabled-children-from-their-peers-doesnt-help-them-advocates-say/?fbclid=IwAR3xmPmBNgJh0HQwbDSeMtd_-2Cc-hr4EDXQ3Zbkyj41xRyhLW30OrP-caM.
Hehir, Thomas, et al. “A Summary of the Evidence on Inclusive Education.” Abt Associates (2016).
MacLennan, Sarah. ‘Down’s Syndrome’. InnovAiT, vol. 13, no. 1, SAGE Publications, Jan. 2020, pp. 47–52, https://doi.org10.1177/1755738019886612.
Mehta, Jonaki. “Special ED Students Benefit from Being Integrated at School. It Doesn’t Always Happen.” NPR, NPR, 9 Jan. 2025, http://www.npr.org/2025/01/09/nx-s1-5234657/special-education-integration-disabilities-school.
Startin, Carla M., et al. ‘Health Comorbidities and Cognitive Abilities across the Lifespan in Down Syndrome’. Journal of Neurodevelopmental Disorders, vol. 12, no. 1, Jan. 2020, p. 4, https://doi.org10.1186/s11689-019-9306-9.