Identifying the Primary Disability: Are We Speaking the Same Language?
Print edition page number(s) 582-585
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. For example, the 2001 Annual Report from the Office of Special Education and Rehabilitation Services reports 28,954 students with visual impairments (U. S. Department of Education, 2001), a figure which is substantially lower than the number of 56,814 students identified by the American Printing House for the Blind for 2001 (American Printing House for the Blind, 2001). The difference is directly attributable to the fact that the federal reporting system only recognizes children whose primary disability has been diagnosed as visual impairment.
Undue emphasis on a single disability
The requirement for educational teams to identify a primary disability may magnify the effects of the selected disability, without appropriate consideration given to the influence of secondary conditions or those that have not yet been identified. A visual impairment is often identified early, especially when it is severe. When it is the primary condition, the effects of cognitive and learning difficulties are often masked by the assumption that lags in learning are associated with a visual impairment. Conversely, if a disability other than visual impairment is identified as primary, the need for services in visual impairment may not be considered, especially if reading is not an immediate goal or if the child is nonverbal, making visual assessment difficult.
Artificial separation of effects
The distinction of disabilities as primary or secondary may perpetuate the idea that specific skills and abilities can be associated with separate disabling conditions. However, the effects of disabilities are both cumulative and interactive. It is natural for parents and teachers to wonder if a child's lack of progress is associated with visual impairment, intellectual disability, or another condition such as autism; however, each child's development is a unique combination of effects that cannot be categorized based on disability labels. When one condition is identified as primary, team members may put greater weight on the implications of that disability and may minimize others.
If there were a formula to describe the development of a child's abilities, it would not be a simple addition problem that summed the proportionate effects of each disability. Rather, it would be a complex algebraic problem that reflected the relationships among life experiences, inherited characteristics, disability effects, and environmental influences. Prioritizing disabilities as primary and secondary carries the risk of inviting compartmentalized thinking like that described by Sapir and Whorf. Those who receive that information may respond to the child according to the categorization of primary and secondary disabilities rather than to the interaction of multiple factors.
The problems presented by the notion of the "primary disability" are further complicated by the fact that states interpret the term differently. Some consider "multiple disabilities" to be a primary disability category, while others specify conditions as separate secondary disabilities. Some, like my own state of Arizona, have a specific term for students who have sensory impairments along with other significant disabilities, which allows for identification of both a sensory impairment and the presence of multiple disabilities.
The dilemma is similar to that posed by the increasing numbers of multiracial people in the United States who want the diversity of their background to be reflected in data that are collected about them. The general term "multiracial" reflects the diversity, but it does not count the variety of identities within that term. For this reason, others prefer to indicate each of their ethnic backgrounds separately. Similarly, for students with multiple disabilities, some states have mitigated the need to separate and select disabilities for children with complex needs by counting "multiple disabilities" as the primary disability. This reflects the combination of conditions and effects, but it does not report the specific conditions for which service is needed.
Like many data-driven decisions that affect individuals, the interpretation of the "primary disability" cannot be simply resolved. Parents and professionals can best view a "primary disability" as a dichotomy of convenience, and work to ensure a more complete description of the learner that will allow the most accurate reflection of learning needs. This means advocating for a child's needs based on function rather than label; maintaining the balance of the educational team in planning so that no individual professional is regarded as "the expert"; and providing input to educational and government entities about the relationship between data collection systems and educational services. Identification of a primary disability can dilute or reduce services for some even as it verifies the learning needs of others. Educational needs can best be defined by function and ability, not by the number of disabilities the child experiences.
Ash, R. (1999). The Sapir-Whorf hypothesis. [Online]. Retrieved September 1, 2007, from http://www.angelfire.com/journal/worldtour99/sapirwhorf.html
American Printing House for the Blind. (2001). Distribution of eligible students based on the federal quota census of January 3, 2000 (Fiscal Year 2001). [Online]. Retrieved April 29, 2007, from http://www.aph.org/fedquotpgm/dist01.html
Office of Special Education Programs (OSEP, 1992). OSEP data dictionary. In Special Education Team, Wisconsin Department of Public Instruction, Instructions for PI-2197 (p. 33). [Online]. Retrieved September 1, 2007, from: http://dpi.state.wi.us/sped/doc/ccinstr06.doc
U. S. Department of Education. (2001). Child count by disability and race and ethnicity. [Online]. Retrieved April 29, 2007, from http://www.ed.gov/about/reports/annual/osep/2004/26th-vol-2-append-e.pdf
Make Your Opinions Known
Readers are encouraged to respond to this Speaker's Corner column by visiting the JVIB message board, <www.afb.org/jvib_message_board.asp>, to engage in an online discussion.
Jane N. Erin, Ph.D., professor, Department of Special Education, Rehabilitation and School Psychology, College of Education, University of Arizona, Tucson, AZ 85719; e-mail: <firstname.lastname@example.org>.
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