Tomorrow Is Too Long to Wait for Inclusion

When Our Society Is Not “Ready” to Be Inclusive Everybody Loses

This article was posted with permission from the author and was originally published at the Washington Post.

“Nico will get to participate as an audience member.”

With those words, the teacher explained why my son, a second-grader with Down syndrome, wouldn’t be part of the end of the year performances. These were just little informal plays that emerged from reading groups, groups in which my son was supposed to be included. But the teacher had announced these end-of-the-year events with a flier cheerfully titled, “Come One, Come All.” There were 23 names on the flier, detailing who was in each play on a given day. Nico’s name was conspicuously absent.

The end of the school year should be a happy time filled with celebrations of all the hard work and preparation for a busy summer ahead. For us, though, Nico’s exclusion from these plays was just another reminder how far we have to go.

This year marks the 25th anniversary of the Americans with Disabilities Act (ADA). Later that year, the Education for all Handicapped Children Act (EHA) was reauthorized and re-named the Individuals with Disabilities Education Act (IDEA). While the ADA mandated “reasonable accommodations,” EHA and IDEA ensure “Free and Appropriate Public Education” in the “Least Restrictive Environment” for children with disabilities. In the 1990s and more recently, as the ADA has begun to transform our culture, “least restrictive” increasingly means a typical classroom with an adapted curriculum.

I’m 42 and graduated from high-school in 1991, the year after IDEA was enacted. Throughout my education, in both public and private schools in the Northeast, Midwest, and South, I can’t remember ever meeting a child with visible disabilities. For me, like most people of my generation and older, the “handicapped” kids were kept in separate classrooms and separate schools, fully segregated from the general population.

But all those seniors who are receiving their high school diplomas this year are part of a growing generation of people, with and without disabilities, who have been learning from each other in inclusive classrooms throughout their lives. They’ve seen both the rewards and the challenges. Ideally, they’ll carry the knowledge that inclusion is possible and desirable into their future, shaping how they interact with others throughout their adult lives. That’s only going to happen if they get the right cues from their teachers and parents.

Nico’s Individualized Education Plan (IEP) proposes a roughly even split between included and segregated education. We are not hardliners. My mantra is that inclusion is not same-ness, and that the best approach is to carefully consider the needs of the individual. Nico is very social. His time in the full classroom builds on those strengths. For some subjects – math and writing especially – he needs a quiet space and one on one instruction, so he gets pulled out for those subjects.

He’s made great strides this year thanks to such instruction. I cannot overemphasize the joy and gratitude that we feel when Nico sits down with a book, his finger tracing each word, reading aloud, clearly understanding and understandable. At such moments, his potential feels limitless.

And then something like this flier happens and the doors slam shut. What’s apparent to us is that if Nico’s potential is, in fact, limited, it’s because of a culture that builds barriers towards inclusion, not because of his genetic makeup. In the disability community, we call this the “social model” of disability, in which problems emerge from a society not ready to be inclusive. His teacher is not a bad person, but she is part of a culture for which exclusion seems natural. In her mind, it’s not a big deal to her to send out a flier listing every name but for my son’s, and then, when we asked, to brush us off. No one is fooled by the idea that sitting in the audience equals full participation. Not us. Not Nico. Not his classmates.

What lessons are his peers learning from Nico’s exclusion? He’s had great relationships with them. They whisper to each other that he’s “famous” in the school. When we showed up for a school musical performance in March (another instance in which his teacher had no knowledge of plans for his inclusion), his classmates surrounded him with cheers, hugs, and happiness to see their friend. We regularly get notes sent home, often misspelled in adorable ways, addressed to their “budy Niko,” and painted with pictures of kids having fun.

When a child with disabilities is kept out of an activity, not only will it hurt them (and their families), but the typical children internalize this segregation as necessary. They will carry that lesson forward. Right now, one of the biggest challenges facing the disability community is how to build more inclusive workspace and living spaces, so that people with disabilities don’t have to be housed in isolated institutions and work in sheltered workshops (often for sub-minimum wage). The ADA and IDEA generation is primed to shake up society, but they are going to need positive models.

It doesn’t have to be this way. Last weekend, Nico got invited to a birthday party. The instant we walked into a party room, four or five kids leapt to their feet to come over and say hello. Overwhelmed, Nico had to lay down on the floor for a few minutes, and the kids just understood that including Nico didn’t mean same-ness. They patted him on the back, returned to their seats, and waited for him to be ready. Within a few minutes, he was up, playing video games and otherwise hanging out with his friends. They found ways to include him, and he found ways to include them.

But for how long? How many times does an authority figure have to signal that Nico is just audience, not participant, before the kids stop seeing him as a peer? How many times do parents have to decide to exclude Nico from social functions? He has been invited to exactly zero play dates by other parents this year. He has been invited to only two birthday parties. By the time he’s in high school, will he no longer be welcome in the loving community of peers that I witnessed last weekend?

Nico is going to be fine. We will meet with the principal of the school, articulate a more robust philosophy of inclusion in his upcoming IEP, and make sure to build better pathways of communication next year. Hopefully, the next time this teacher wants to do readers’ theater, she’ll collaborate with the special ed teacher, rather than just inviting those students to watch. All it takes is a consistent expectation of inclusion, something that may not come naturally to those of us raised in schools that segregated the children with disabilities, but we can all learn.

To celebrate the 25th anniversary of IDEA, I am asking all educators and parents to go out of their way to be more inclusive. The law mandates certain kinds of formal structures, but that’s not enough. Kids are smart. They know that “participating” as an “audience member” is that special kind of nonsense with which adults patronize children. Participation is participation, and “come one, come all” must really mean everybody, for everyone’s sake.

Photo Credit: David Perry

David Perry is a freelance writer who focuses on disability issues. He can be found at How Did We Get Into This Mess and on Twitter @lollardfish.

Is Inclusion A Mirage? (Part Two)

inclusion mirage 2

By Aaron DeVries

A version of this article was published on the Just A Daddyo blog.

The Administrator’s Role In Service Delivery

The administrator’s responsibility to ensure efficient and effective delivery of services is part of the discretion as they are responsible for the finances of the school district. The administrator has to do what the law states but they have to do it in a way that is efficient and effective so the district is not wasting resources. The administrator’s responsibility to their own values is also part of the discretion as everyone brings their past to the table. Everyone has a different background and set of values that they have arrived at over their lifetime that they bring to the table all the time. Last year the local school district where I live stopped holding a special education prom that had taken place for years as a school sponsored event. One of the reasons that came up is that in Special Education the goal is for full inclusion but as you have seen in this essay that is not even in the law itself so they are bringing their own values into their discretion.

Training and expertise is also part of the administrator’s discretion. Depending on where you were trained or specifically what you are trained in you will have a different take on what the law means. If you get your degree at a college that is big on inclusion and someone else goes to a college that does not agree with inclusion they are going to interpret the laws differently. In the last year our district hired a new special education director who has he background in social work so she has different training than a director that was a special education teacher. The final area is the administrator’s responsibility to act in a manner consistent with the larger legal/constitutional structure and associated values. In this area of the law they have to look at the whole law and see how this piece fits in and then determine if how they are interpreting it is consistent.

It’s All About The Children

With the idea of inclusion in special education, since it is not mentioned in the law, it leaves room for administrative evil. Even though parents are part of a team making the decisions and there are remedies for solving disagreements, the deck seems to be stacked heavily in the school districts favor most of the time. I am a person that likes to have something in black and white and I read the regulations and come prepared to meetings to voice my opinion on the topics being discussed but there is a fine line that needs to be walked so that you do not end up hurting your child as well. In order for the team to make decisions they need to have data to base it off and we have had times where there was no data to be found. It is hard to argue with school staff on what should be done when you have no data to support either side of the discussion. The “banality” comes into play where the district administration is so wrapped up in not wanting to get sued that they lose sight of what we are all here for and that is the children. I think that if you blindly follow the administrative law without using any common sense you can get yourself in trouble pretty fast.

My background is in accounting and the reason I went to college for accounting is that in high school I took the classes and it was so black and white. Well needless to say when I got into college there was some gray added into it but I still liked the parts where it was black and white. I think because of this background I do not like laws that are written like this because it does not tell me exactly what needs to be done or what things will meet the definitions and which will not. I was a sales tax accountant at my previous job and there were states that would lay out exactly what something meant and then there were states that you could decide either way because it was written so vague. Since I have seen some laws written more precisely I know it can be done but I also know that every situation is not the same so if you write it more generically it will cover more situations.

Another reason why I would really love for these laws to be more specific is that I have seen what happens when they leave so much room for administrative discretion. As the statute says above parents are to be involved in any group that makes decisions on the placements of their children so naturally there are times when the parent and school district have two vastly different opinions on what needs to be done. I think most parents with a child in special education will just go along with the school district because they should know what is best for the student. If you are a parent that does not agree with the school district you find yourself having to spend a large amount of time looking at laws and talking to other parents to figure out what your options are. If you are able to come up with a good argument and work with the team you may get the placement you want. But if that does not work all you are left with are steps that may cause you to get a lawyer involved so you are probably going give up on your request or move the child to another school district where you can get the placement you want. The school district seems to hold the upper hand in these situations because they know that the chances are pretty slim that you will pursue legal actions against them.

Working As A Team

As a parent that has been involved in many meetings where we are discussing our daughter’s placement the holes in this process have become apparent. The parents and school staff are supposed to function as a team when making decisions in the best interest of the students, but that is hard to do when one side holds most of the information that is needed. Since the majority of the time that the parents see their kids is before or after school and on weekends they rarely see how they function in an academic setting. They may stop into school to observe but that is not very frequent and is only for a short period of time. The school staff sees the child in the academic setting day in and day out so they see how a child can handle what we are deciding for them. If the school staff is not relaying that information to the parents how are they supposed to be active team members and contribute to the discussions? Also if the parents do not have all the information that they need to help make a decision on placement how do they come to the meeting prepared to propose a placement? The parents then have to rely on what they are being told by school staff and defer to them with the placement decision. We had a situation a couple years ago with our daughter’s team where I had asked for data in writing in advance so I could look at it and be prepared to contribute for the meeting. I never heard anything back from them and during the meeting I again asked for the data and they just sat there quietly. I asked them “How am I supposed to contribute to the team if I do not have any information to look at?” and again there was no response. The regulations clearly say they have to keep progress information on the student and to provide it to parents when they ask for it. At that point in the meeting as a parent you have two choices you either go with what the school has proposed since you have no data to propose something different or you start working through the administrative appeals process. Parents do not often go through the appeals process as it is hard to go down that path without alienating the school staff and since most parents do not have the documentation they need to prove a better placement is necessary.

The system forces us to put our faith in the administrators as we hope they are looking to ensure efficient and effective delivery of services, have good values, have the required training and expertise, and have the necessary legal background to perform their job in the way it should be. I am one that does not take everything at face value and I will not take what they say as gospel just because they are an administrator. I am fearful that too many people just rely on administrators to be correct all of the time when they are human and they are going to make mistakes. In situations like special education where it involves my child there is no room for administrators to make mistakes.

Mirage or Right?

So now it is time to answer the question posed in the title “Is Inclusion a Right or a Mirage? Actually the answer is no to both parts. As I described earlier in the paper, it is not specifically addressed in IDEA 2004 so it is not a right. Since there are many people that think inclusion, as was defined, is the best thing for most kids I do not think it is a mirage either. Some school districts or even specific buildings in school districts are working towards inclusion and as long as school staff and parents are trying to make it happen it will never ride off into the sunset.

Photo Adapted from falcon0125

This is Part Two in a series of two. You can read Part One here. What do you think? Is inclusion a right protected by the law? Tell us in the comments section below!

Is Inclusion Just A Mirage? (Part One)

inclusion mirage

By Aaron Devries

A version of this article was published on the Just A Daddyo blog.

I am a parent of a child with special needs and because of her special needs she is in the special education system. If you have never had a child in special education or worked in special education as a career you will not fully appreciate the complexity of the system. The first time it really hit me that there are two very distinct yet intertwined education systems was the night we went to our son’s Kindergarten conference and our daughter’s Preschool conference. We first went to our son’s conference and it was a “normal” conference with just us and the teacher in attendance. We just talked about the normal things that everyone one is used to discussing and it was over in fifteen minutes. Once we were done we left and went to our daughter’s conference and upon arrival I was shocked at the difference. Unlike our son’s conference where we met in the classroom for her conference we were meeting in conference room around a large table and there were over ten people in the room. I would later find out that in the special education world this is known as an IEP (Individualized Education Plan) meeting and they are vastly different than “normal” conferences. This was my first experience with the world of special education and just a taste of the complexity that it involves. Parents, teachers, and school administration talk about “inclusion” during meetings but often we do not get to deep into it because of time constraints and because we assume everyone has the same understanding we do.

How You Think About Inclusion Depends On Your Values

Inclusion is a hotly debated concept in education because it relates to both educational and social values, as well as the student’s sense of individual worth. With inclusion as with any controversial topic there are those that hold vastly different views. Some skeptics view it as a policy that incorrectly thinks inclusion will save school districts money by having to have fewer special education teachers. They also think that trying to force inclusion on all special education students is discriminatory just like forcing them all into special education classes would be. On the other side of the coin there are those that believe all kids belong in regular education class rooms and that teachers should be able to meet the needs of all students regardless of what the needs are. The majority of teachers and parents fall somewhere in between these opposing views and often wonder if inclusion is legally required and question what schools and their staff must do to meet the needs of students in special education.

The following definitions are provided by Research Bulletin Number 11, 1993, from Phi Delta Kappa’s Center for Evaluation, Development, and Research.

Mainstreaming: This term has generally been used to refer to the selective placement of special education students in one or more “regular” education classes. Mainstreaming proponents generally assume that a student must “earn” his or her opportunity to be mainstreamed through the ability to “keep up” with the work assigned by the teacher to the other students in the class. This concept is closely linked to traditional forms of special education service delivery.

Inclusion: This term is used to refer to the commitment to educate each child, to the maximum extent appropriate, in the school and classroom he or she would otherwise attend. It involves bringing the support services to the child (rather than moving the child to the services) and requires only that the child will benefit from being in the class (rather than having to keep up with the other students).

Full Inclusion: This term is primarily used to refer to the belief that instructional practices and technological supports are presently available to accommodate all students in the schools and classrooms they would otherwise attend if not disabled. Proponents of full inclusion tend to encourage that special education services generally be delivered in the form of training and technical assistance to “regular” classroom teachers.

Professional organizations such as the National Association of School Psychologists (NASP) feel that inclusion is important enough to draft a position statement which includes the following excerpt. “NASP, in its continuing commitment to promote more effective educational programs for all students, advocates the development of inclusive programs for students with disabilities….. NASP believes that carefully designed inclusive programs individualized to meet the needs of students with disabilities represent a viable and legitimate option on the special education continuum that must be examined for any student who requires special education” (“Position Statement on Inclusive Programs for Students With Disabilities,” n.d).

On November 19, 1975, Congress enacted Public Law 94-142, also known as The Education for All Handicapped Children Act of 1975. Initially, the law focused on ensuring that children with disabilities had access to an education and due process of law. Congress included an elaborate system of legal checks and balances called “procedural safeguards” that are designed to protect the rights of children and their parents. Congress has amended and renamed the special education law several times since 1975. On December 3, 2004, the Individuals with Disabilities Education Act was amended again. The reauthorized statute is the Individuals with Disabilities Education Improvement Act of 2004 and is known as IDEA 2004. The first purpose of IDEA 2004 is “To ensure that all children with disabilities have available to them a free appropriate public education that emphasizes special education and related services designed to meet their unique needs and prepare them for further education, employment, and independent living” (20 U.S.C § 1400 (d) (1)). The second purpose is: “To ensure that the rights of children with disabilities and parents of such children are protected” (20 U.S.C § 1400 (d) (1)).

No Inclusion in IDEA, Only LRE

The interesting part of this discussion starts when you discover that inclusion is not listed in the statute or the regulations. Instead the closest thing to inclusion is called Least Restrictive Environment (LRE) and it is described in the statute as follows: “To the maximum extent appropriate, children with disabilities, including children in public or private institutions or other care facilities, are educated with children who are not disabled, and special classes, separate schooling, or other removal of children with disabilities from the regular educational environment occurs only when the nature or severity of the disability of a child is such that education in regular classes with the use of supplementary aids and services cannot be achieved satisfactorily” (20 U.S.C § 1412 (a) (5) (A)). Lastly it describes parental involvement in the placement decisions. “Each local educational agency or State educational agency shall ensure that the parents of each child with a disability are members of any group that makes decisions on the educational placement of their child” (20 U.S.C § 1414 (e)). To further complicate inclusion and LRE the state also has laws that regulate special education and then the district may have special education policies as well.

I think this statute leaves many things open to administrative discretion. The first place that allows some administrative discretion is found in the words “To the maximum extent appropriate” since they are not concrete words that are going to mean the same thing to everyone. What I think is the maximum extent appropriate can mean a totally different thing to you. To one person it is appropriate to place the child in a regular class room but to another it would be appropriate to place them in a fully contained special education classroom. Since it costs more money to have a self contained classroom because of the additional space it takes up along with the lower staff to student ratio a school district may be motivated to have more kids in the regular education classroom.

The second place it allows some administrative discretion is found in the words “achieved satisfactorily” since once again they are not concrete words that are going to mean the same thing to everyone. It could mean they are not able to meet the  requirements of No Child Left Behind or it could mean they do not meet the academic requirements of the district or their behavior does not allow them or the other students to learn.

The third place it allows some administrative discretion is found in the words “the nature or severity of the disability of a child” since as I have stated twice before the words mean different things to different people. For some parents they have a hard time talking about their child having a disability so they may not want to hear that it plays a role in the child’s placement in school. Sometimes people will generalize what they have witnessed about one child on the whole population of children with the same diagnosis. For example if they have seen a child diagnosed with autism that has not been able to function in a regular classroom they may assume the next child that comes along with the same diagnosis will not function in that setting as well.

The final place I think it allows some administrative discretion is found in the words “use of supplementary aids and services” as it does not give a list of specific aids or services nor does it describe how many you need to try or for what length they should be tried before you determine it is not going to work. When picking aids and services people will pick the ones they have tried on other kids which makes sense but not all kids will react the same way to things. The more things you try the longer it will take to figure out what works and what does not work so you are inclined to try out fewer things to get it done faster. Another thing that happens is you start a child off a few minutes in a regular classroom and then see how that goes. If it goes well you will increase the amount of time or if it goes badly you may try something else or reduce the time.

Photo Adapted from falcon0125

This is Part One in a series of two. You can read Part Two here. What do you think? Is inclusion a right protected by the law? Tell us in the comments section below!

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