Module 4: Enhancing an Inclusive School Culture for Students with Complex Needs
Why Do We Label?
“Over a decade ago, I was diagnosed with Rheumatoid Arthritis. Coming to disability later in life has afforded me the opportunity to firmly establish myself as a person with a name, an identity, and personal characteristics unique to me. I am not an arthritic person or even a person with arthritis: I am Elaine. I was Elaine before my diagnosis. I am Elaine today, and I will be Elaine beyond my lifetime. Should I have some marker that identifies me to others that come after me, it will read, “Here lies Elaine, not, here lies an arthritic person.” It may even include descriptors of me like wife, mother, and nana. It will not include my diagnosis because it has no meaning here. It doesn’t describe me. The only thing my diagnosis has been useful for was to connect me to the right resources and supports I needed.”
Elaine Jenkins
So, if we run the risk of experiencing the negative aspects of a label, why attach labels at all? As mentioned previously, labels can offer us information and knowledge. Labels in the form of diagnoses and designations help to ensure that students with multiple disabilities and complex needs have access to the resources and supports they need.
Diagnostic labels come from the medical model of practice. Diagnosis is defined as the act of identifying a disease from its signs and symptoms and as investigation or analysis of the cause or nature of a condition, situation, or problem. In medicine, diagnoses are made to prescribe treatment to cure, “fix”, or reduce the impact of the disease or condition.
Designation
Designation is an educational categorization of students into levels of support needs. Designation categories as described in the B.C. (2016) Ministry of Education Special Education Services: A Manual of Policies, Procedures and Guidelines focus on meeting educational needs. A medical diagnosis alone does not determine either categorization or level of support. Students with diagnosed conditions are to be identified in the category that best reflects the type and intensity of their needs.
The majority of students with multiple disabilities and complex needs supported by Inclusion Outreach are designated Physically Dependent. The information provided by labels of a student in category A: Physically Dependent, either by diagnosis or by a specified support needs designation, does not provide the information necessary to support their inclusion in a classroom. Once access to resources and supports has been achieved, we can leave the labels behind.
From this point forward, our focus needs to be on the student, who they are, and what they need. John is in Grade 4 and requires support from an educational assistant, a modified educational program as specified in his IEP, and additional supports to meet his individual needs. When we say leave the labels behind, it is not a suggestion to replace the labels with some other identifier. Instead it is a suggestion to replace labels with information that is descriptive, meaningful, and necessary.
Physically Dependent
“A student with dependent needs is completely dependent on others for meeting all major daily living needs. She/he will require assistance at all times for feeding, dressing, toileting, mobility, and personal hygiene. Without such assistance and personal care support, attendance at school would not be possible.”
B.C. Ministry of Education, 2016
- Why do you think that a medical diagnosis alone does not determine either categorization or level of support?
- What do you think about the definition of Physically Dependent?
- What you think about the term Physically Dependent?
- Would you change either the definition or the term?