Identifying the Primary Disability: Are We Speaking the Same Language?

In the fields of linguistics and cognitive psychology, there is a much-debated theory known as the Sapir-Whorf hypothesis (Ash, 1999). Proponents of the theory hold that words can determine how people think about an idea. Opponents of the theory believe that there are fixed perceptual categories that are not heavily influenced by language. Perhaps the same debate is worth undertaking in special education. When a new term or phrase is introduced, does it reshape the way we conceptualize the idea? The term "primary disability" is one phrase that has the potential to influence perceptions of a child's abilities. Federal child-count data requires that states report the "primary disability" of children with disabilities, described as the "major or overriding disability condition that best identified the individual's impairment; the impairment that is most disabling" (OSEP, 1992). In a data-driven system, it has provided an orderly way of documenting and supporting needs and, in turn, funding for services to meet those needs. However, like many good ideas that have unexpected effects, this one has created artificial categories that restrict as well as enable. For students who have a disability that requires significant educational adaptation, identifying a "primary" disability may help to support their specialized needs; however, students who have several disabling conditions may be overlooked because their adaptive needs cannot be easily linked with a specific disabling condition. Federal law provides only a general definition: a primary disability is the condition that has the greatest effect on the child's learning, when a child has more than one disability. States and school districts must develop their own consistent definition of a "primary disability," and the educational team may consider one or more of the following factors in defining a primary disability: * The disability that will require the most expensive and complex adaptations * The disability that causes the greatest deviation in learning from a typical developmental pattern * The disability that has the greatest effect on academic performance For children who have multiple disabilities, there are some notable disadvantages of the requirement to identify a primary disability. IDENTIFICATION TO MEET INDIVIDUAL NEEDS Some specialized settings for visually impaired students enroll only students who have visual impairment as a primary disability. When the desired setting is seen as a high-quality educational setting, families and educational teams will often agree that the visual impairment is the "primary disability," even though other disabilities are functionally significant-sometimes even more significant than the visual impairment. Often, children with multiple disabilities and visual impairments have severe cognitive disabilities, non-symbolic communication modes, and severe physical disabilities. Many children with lifelong multiple disabilities will never make academic progress due to extensive and severe disabilities, and it is inaccurate to call visual impairment the main reason for their significant delays in learning. The requirement to identify a primary disability sometimes influences professionals and families to magnify the effects of visual impairment so that the child can receive a specialized education that will address his or her diverse needs. UNDERCOUNTING SERVICE NEEDS AT THE FEDERAL LEVEL A second disadvantage has been the restriction imposed by the term "primary disability" in counting visually impaired students for federal purposes. Although more than 60% of students with visual impairments have multiple disabilities, these students are not recognized as visually impaired because of the forced-choice classification of students as multiply disabled OR visually impaired. As a result, there are major differences between the numbers of children identified as visually impaired by various sources. …