Why Separating Kids with Disabilities from Their Peers Hurts Instead of Help

As I’m writing this article, disability and inclusion are hot topics. The Internet is abuzz with the video of a Florida State football player who sat next to an all-by-himself autistic boy eating in a high school cafeteria. The Pittsburgh Post-Gazette has reported on the crowning of the North Allegheny Senior High School homecoming king and queen, both who have Down syndrome. And Pittsburgh is hosting a national conference called Dignity in Schools, sponsored by Education Rights Network; the conference is highlighting how school disciplinary actions, including zero tolerance policies, negatively affect students with disabilities and minorities. 

This month also I had a conversation with Beth Jacks, whose daughter Halle is in the eighth grade in the Pine-Richland School District. Halle was born with osteogenesis imperfecta, more commonly called brittle bone disease, and because of this she is on an individualized education plan for physical education and needs to take precautions when she does things, including everyday activities like walking through crowded hallways at school.  Beth expressed the difficulties that come when one has a child who doesn’t “look” or “act” disabled. “Sometimes disabled is hard to define,” she said, “especially when there is not an obvious physical challenge nor cognitive delays.”

 The World Health Organization’s concept of a disability is “an interaction between health, environmental and personal factors, which affects a person’s capacity to participate in developmentally appropriate activities in his or her community.”

Torrie Dunlap, executive director of the nonprofit organization KIT (Kids Included Together) said, “Disability can happen at three levels: 1) body function or structure (such as difficulty breathing); 2) limitation in activity (such as difficulty coping with demands); and 3) restricted participation (such as exclusion from school). It is an interaction of factors that affects the child or youth in unique ways in different contexts. For one child, it may be that her chronic asthma affects her participation in youth sports. For another child, it may be difficulty interacting with other kids that affects his experience in an after-school program. For a third child, it may be an organization that prohibits or restricts his participating in an enrichment program.”

In a TedX Talk that has gone viral, Dunlap talks about societal models of people with disabilities. She said, the medical model sees disabilities as problems to be cured or fixed. The social model sees the disability itself a neutral (as opposed to a negative as in the medical model) and believes that societal barriers create challenges for disabled people, and that society needs to change the interaction between people and their environments. The biopsychosocial model, Dunlap explained, accepts the labels and diagnoses as being an important part of a person’s identity and understands that the environment plays a role in how people function. This last model is the model that KIT has adopted as it works to create programs and a society that is inclusive. (KIT was incorporated in 1997 with the mission “to teach inclusive practices to child and youth programs,” according to their website, first in San Diego County where they began, and then expanding around the world. Today, they teach more than 20,000 learners a year, conduct trainings in 220 domestic locations and 49 international ones. KIT has contracts with the United States Marine Corps and Navy, and they work with many community organizations such as HeadStart, Boys and Girls Clubs, 4-H, and more. ) 

And the work they do is so important because statistics show disabilities (both professionally diagnosed and self identified) are on the rise.  In “The Changing Landscape of Disability in Childhood”, published in the journal Future Child,  researchers Neal Halfon, Amy Houtrow, Kandyce Larson, and Paul Newacheck of the Center for Healthier Children, Families and Communities at the University of California Los Angeles report that “childhood disability is increasing and that emotional, behavioral, and neurological disabilities are now more prevalent than physical impairments.”

Because of this, the U.S. Department of Education has funded SWIFT Schools, which stands for school wide integrative framework for transformation, a national K-8 technical assistance center that helps schools build “capacity to provide academic and behavioral support to improve outcomes for all students through equity-based inclusion.” The SWIFT program, which is housed at the University of Kansas, has a five-pronged approach: administrative leadership, multi-tiered system of support, integrated educational framework, family and community engagement and inclusive policy structure and practice.

SWIFT supports six regional parent technical assistance centers; the one for Pennsylvania is in New Jersey http://www.parentcenterhub.org/region1-mainpage/

So with all of this talk about disabilities and inclusion, what does inclusion really mean?

What is Inclusion?

Dunlap defines inclusion as the “intentional process of designing programs supportive of all people.” PBS Family’s website is filled with information on disabilities and inclusion and their explanation is a bit more extensive: “Inclusive education means everyone is included in their grade-level in their neighborhood school. Inclusion means students are given the help they need to be full members of their class. Inclusive education involves districts supporting schools as they include ALL the students who live in their communities. How do teachers meet the needs of all students in an inclusive school?

• Teachers plan their lessons to meet each student’s learning needs.
• Teachers teach in small groups that can change as the students’ needs change.
• Teachers teach the same content in different ways.
• Teachers work with other adults in the school to help meet each student’s needs.”

But this brings us to one of the challenges of inclusion, and one of the reasons that some politicians and educators say inclusion isn’t beneficial. The late Pat L. Tornillo, president of the Florida Education Association United, was a vocal opponent of inclusion, believing  it was all too frequently implemented without the classroom teachers being given the resources, training, and other supports necessary to teach students with disabilities in their classrooms. Consequently, "the disabled children are not getting appropriate, specialized attention and care, and the regular students' education is disrupted constantly," according to the Southwest Educational Development Laboratory.  Dunlap said that this can be the case, especially since  inclusion in K-12 is “so sporadic even within a school district, and from district to district there are so many disparate practices. More resources need to be given to teachers. Teacher prep programs are starting to revamp their programs to better help prepare teachers to accommodate disabled students.”

But Dunlap and many parents of disabled students believe in the power of inclusion. When Christopher Lofink and Madison Pavlick, were elected homecoming king and queen at North Allegheny Senior High, Denise Pavlick, Madison’s mother, told The Pittsburgh Post-Gazette, “This shows that children with Down syndrome benefit from inclusion.” Madison has been in school with some of her classmates since kindergarten. Joyce Lofink also noted the benefits of inclusion for her son.“ Christopher has been mainstreamed within the North Allegheny school system since starting kindergarten. This honor is the accumulation of 13 years of inclusion. He interacts with his peers every day, and these students have embraced and nurtured Chris to help him develop into a confident adult,” she said.

PBS.org said, that key benefits of inclusive education:

• Families’ vision of a typical life for their children can come true.
• Children develop a positive understanding of themselves and of others.
• Friendships develop.
• Children learn important academic skills.
• All children learn by being together.

The Community Colleges of Allegheny County also believe in the power of inclusion, as it is a priority and a focus. CCAC serves more than 20,000 students, and 12 percent of the student body comes to the colleges with documented disabilities, according to Sumana Misra-Zets, the civil rights compliance officer in the Office of Institutional Diversity and Inclusion. Because inclusion is a priority and a focus at CCAC, support services are extensive. Students at CCAC are a diverse population, with five decades of ages represented (including two nine-year-old child prodigies), a dual enrollment program for high schools students, and programs that focus on vocational rehabilitation.

Misra-Zets said the most important things for parents of a student with a disability to know is that K-12 IEP or individualized education programs do not “translate to post-secondary education” and the student must learn to be a self-advocate. CCAC runs a prep program called PAS (Promoting Academic Access) for students with disabilities and this program includes an orientation for parents.  

All parents, whether or not you have a disabled student, should understand some basic acronyms and disability law. First, disabled kids have the right to attend the program or public school of their choosing. The organization or school has to figure out how to accommodate them. 

Second, like anything associated with government, education and law are rife with acronyms and legalese. Understood.org has provided a quick breakdown of the 11 most common:

1. Accommodation. A change in teaching techniques, materials or environment. Accommodations can help students work around or overcome weaknesses. This can level the playing field for kids with learning and attention issues. For example, if your child has trouble with writing, she might be allowed to answer test questions orally. Even with that accommodation, though, she’s expected to learn the same content as other kids.
2. Modification. A modification is a change in what a student is expected to learn and demonstrate. For example, instead of being asked to write an essay analyzing the outcomes of three major battles during the American Revolution, your child might be asked to describe in writing the basic facts of three American Revolution battles. Modifications are often confused with accommodations, but they’re not the same thing.
3. FAPE. Children with disabilities—including eligible learning and attention issues—have the right to free and appropriate public education (FAPE). FAPE is one of the most important terms to know for your child. It ensures that she receives an education that is “appropriate”—it meets her individual needs.
4. LRE. Least restrictive environment (LRE) means that students with disabilities have to be educated in the same setting as students without disabilities as much as possible. “Setting” refers to a general education classroom. For example, if your child has dyslexia or ADHD and needs specific supports and services to succeed in the general education classroom, the school has to offer those supports and services

5. IDEA. The Individuals with Disabilities Education Act (IDEA) is the federal law that guarantees the right to FAPE and the right to be educated in the least restrictive environment. IDEA serves students with disabilities in a number of other ways, too.

6. IEP. An Individualized Education Program is a legally binding document. If your child qualifies for special education, this is a very important document for you and your child. It spells out your child’s educational goals, academic challenges and strengths. It describes how she’s currently doing academically. It also lists when and where your child will receive special education services and accommodations.
7. PLAAFP. Present Level of Academic Achievement and Functional Performance, also known as PLOP (present level of performance) or PLP. All three of these acronyms refer to the same thing. If your child has an IEP, PLOP serves as the starting point or baseline for the coming year’s IEP. It explains your child’s academic skills (like reading level) and daily life skills (such as the ability to hold a conversation). This plays an important role in setting annual goals for the IEP.
8. FBA. A Functional Behavioral Assessment is a process used to try to solve a child’s behavioral problems. It can uncover why a student is having behavioral issues by identifying social, emotional and environmental causes. The school then writes a behavior intervention plan (BIP), which outlines how to address the issues.
9.  IEE. Independent Educational Evaluation is different from an evaluation given by the school. Professionals who are not school district employees conduct IEEs. Parents sometimes request an IEE if they disagree with the results of the school’s evaluation of their child. Sometimes the school requests an IEE when they don’t have the right experts to evaluate a specific issue a student might have. You have the right to request that the school pay for an IEE. Whether or not the school ends up paying for an IEE, it has to consider the results.
10. Due Process. The legal method you can use to formally disagree with the school. You have to file a written complaint to begin the process. The complaint could have to do with your child’s eligibility for special education services or the types of services she receives. It’s important to understand your legal rights under due process.
11. Prior Written Notice. A formal letter the school sends to parents. It is also a legal right under IDEA. Any time the school district denies, refuses or accepts a parent request for an evaluation or change to special education services, it must give prior written notice. It explains what the school plans to do or refuses to do.

And finally, parents should know that by law, a student with a disability should not be disciplined for behavior that is a manifestation of his or her disability, according to Individuals with Disabilities Education Act. In 2015, the American Civil Liberties Union of Pennsylvania published a report titled “Beyond Zero Tolerance: Discipline and Policing in Pennsylvania Public Schools” that said 11.5 percent of all students  (and 22 percent of all Black students) who received out of school suspensions in 2009-2010 had documented disabilities. And this why groups like the Education Rights Network thinks a change is needed to the disciplinary policies of Pennsylvania’s public schools need to be revamped to create “restorative justice policies”.

 How Can You Get Involved?

The best way for you to support your child is to encourage her to participate in activities where she can meet children her same age with different abilities. You can also enroll your kids in programs like 4-H, which is open to boys and girls ages 5 to 18. Beth Jacks said she loved their inclusive horseback riding program. (Halle has also participated in special sports programs such as the Mighty Penguins sled hockey program at the Lemieux Center in Cranberry Township, handicap horseback riding, and Miracle Baseball, as her mom thinks sports skills are important to learn.)

SWIFT said parents should learn more about inclusive education. Share books, websites, articles you find with school staff. Learn about your district’s policies concerning inclusive education. Ask your school leaders and teachers how they are meeting the needs of diverse learners. Work with other parents to improve inclusive practices at your child’s school. Volunteer at the school to help support inclusive practices.

Or work with or give to organizations like KIT. KIT welcomes you to follow them on any of their social media channels or to support them by shopping through the Amazon Smile and designating them as your selected charity. The revenue generated at KIT’s training programs “supports the public awareness and advocacy work that we do. Contributions from individuals, corporate and private foundations allow us to continually create new curriculum, based on the latest research.” Any and all community organizations or individuals can contact KIT for training, which is offered online or onsite, with coaching/consulting, online support, public speaking available. Their ultimate goal is to put themselves out of business by creating an inclusive world people of all abilities.