I would venture to say that most students in the five counties of Southeastern Pennsylvania who have what we consider to be severe disabilities receive special education and related services in non-inclusive school programs. Before I discuss how and why we should continue movement away from these segregated settings and toward quality supported education in truly inclusive settings, l think it is important we have common understanding of (a) what it means in this context to have a severe disability and (b) why students with severe disabilities are educated the way they are in our area.
We know that severe disabilities is a broad term used in human disability and special education to describe a group that includes many different types of people. But it is important to note that at present many professional organizations and advocacy groups consider people to have a severe disabilities if they require persistent, perhaps, lifelong support in one or more important life skill area. That is why it is often the case that people with physical disabilities have severe disabilities, as do many with autism, dual sensory impairments, and perhaps even some with significant behavior disorders. People with extensive mental retardation are very likely to have support needs that are significant and ongoing, and that span most or all of these life skill areas.
Historically, we have perceived of people with severe disabilities from within a medical model. In this worldview, disabilities often have a pathological etiology that has caused the people who have them to have a deficit of a sort that we have long believed we can diagnose and remediate (which of course, most of the time we cannot). This deficit-oriented thinking has for years pervaded definitions of many disabilities and syndromes, has been the basis for the mainstream public perception of human disability (think about, for example, our interest in telethons designed to raise money to “cure” disabilities), and is still the basis for special education for these children when they are school-aged as it is the foundation of, among other things, the continuum of services. It is this ill-conceived continuum that has led our culture to believe that the more severe a disability is, the farther from typically developing peers a student must go to be educated, be it a separate classroom in a regular district school or a separate, center-based school, as are often found in the Intermediate Units in PA and the Special Services School Districts in NJ. It has helped create and sustain special education as a separate system of education running parallel to general education rather than acting as a complement to it.
Inclusion and supported education will not work effectively for students with severe disabilities when attempted from within this inherently flawed medical model. Inclusion is not merely a set of programs and procedures designed to bring students with severe disabilities into the general education classroom with support within the context of deficit-oriented, medical model thinking. It is practical and pragmatic, to be sure, but it needs also to be philosophical and theoretical for it takes a mind-shift in the way we conceptualize human disability as well as what a school is and why it exists. What is needed to make inclusion and supported education work is a community-wide shift in thinking toward a more capacity-oriented social model of human disability in which disabilities are defined by the nature of the social and functional support that exists around a person with severe disabilities. (This constructivist approach enables us to perceive a reality of disability from the nature of idiosyncratic social networks and relationships in place in our communities.) Movement toward thinking of this sort by all members of an educational community enables the movement toward inclusion and supported education.
Indeed, in order to be done well, inclusion and supported education requires all members of a school community to spend time coming to a consensus of purpose and achieving a broad level of commitment to all the students in that community that it serves. It takes frank discussion and visionizing. It necessitates the identification of individual and collective biases and barriers as well as strategies for getting over or around them. It needs to come more from within, as a result of collaborative planning, strategizing, and decision making.
School communities will know that they are moving in the right direction when they can find evidence that their students with severe disabilities, for example, identify themselves with general education classes. If you are a principal, you will know are making progress toward inclusion and supported education when a student with severe disabilities gets off the bus in the morning; rolls to a general education homeroom in your school; hangs up her coat next to the other kids in that classroom; hears her name called on that attendance list; goes to lunch and assemblies with those classmates; and even sits, perhaps, through Science or Math with her classmates in that room. She may not spend her entire day in that room (as some of her non-disabled classmates may not), but she identifies herself as a member of that group. Instead of coming in from the outside to be included in general education activities that are deemed appropriate for her to be there for, she leaves for whatever special education cannot be done in that room and is therefore not appropriate for her to be there for. The difference may seem subtle, but it is critical.
The promise and efficacy of inclusive and supported education is supported by the literature, by practice in a number of places in our country, and by human values. Best practices for students with severe disabilities suggest, partly because of a likelihood of skill generalization difficulties, a curricular approach that emphasizes the need for functional skills taught in criterion environments. These community environments are by definition inclusive; they are our towns and cities, our stores and restaurants, and our public buses and sidewalks. If our desired outcomes for young adults include participation in these settings, and these young adults do not generalize well, then we need to teach functional skills in criterion settings. For school aged children this means inclusive school settings.
At least a dozen or more years ago I participated in an internet discussion group devoted to special education. One participant, Jim Paladino of Colorado, responded to a query for a one sentence definition of inclusive education with the following. I think his response says it all:
Inclusion is many, many things and it changes with the needs and desires of the individual. It depends on your community, your family, and your friends. It is as simple as being accepting of the differences of others and as complex as being creative around strategies to allow individuals to truly feel part of a group. It is not a parallel existence, but mutually interactive living. It is full participation to the capacity possible and desired. It is natural, not forced. It is something friends and family do by nature. It cannot be taught. It is not the least restrictive environment, but the most participative.
Until next time...
