When we have a child with, or diagnosed with, a critical and/or chronic medical condition it is generally very confronting. Words like “devastating, shocking, frightening, taxing” may better describe the experience.
Our first concern is to focus on our child’s health. Their survival, wellbeing, happiness and the management of the illness becomes our natural priority. It consumes our energy, emotions and often, our financial resources. But somewhere in all of this, the question of “What about school?” will probably arise.
The fact is, schooling for a child with a serious or chronic illness is a whole different scenario. The dimensions of their illness can change multiple factors in their lives. It can have a significant impact on their learning and socialisation and does need to be taken into account by parents, teachers and school systems.
Significant research has shown that for children and young people, serious illnesses can impact education in multiple ways. Why? The effects of medications, fatigue, anxiety, social-emotional impacts of feeling “different”, pain, cognitive problems — indeed absence from school — can all diminish the capacity to learn.
Unfortunately, because illnesses are frequently invisible, or out of sight when kids are away from school, the issue is often overlooked by the teacher and the school.
The only legislation that exists in Australia to ensure students with serious medical conditions receive equitable consideration in school is under Commonwealth Law and is called the Disabilities Discrimination Act (1992).
This is a fact. But so is your child’s illness and the importance of their educational needs.
Many parents baulk at labels, struggling with the idea that they or their child may be seen as “different”, or discriminated against in some way because of their illness. Yet, the Disabilities Discrimination Act exists precisely to remove, or reduce these barriers. It can only be effective if it is brought into play rather than ignored for fear of the label.
To better understand, let’s look at the United Nations’ definition of Disability.
Disability results from the interaction between persons with impairments, conditions or illnesses and the environmental and attitudinal barriers they face. Such impairments, conditions or illnesses may be permanent, temporary, intermittent or imputed, and include those that are physical, sensory, psychosocial, neurological, medical or intellectual. (United Nations)
Whether we like it or not, kids with serious medical conditions are in school systems that operate an environment designed to suit a “middle ground”. It’s a one-size fits all approach which, over time, has seen the mandated funding and provision of Adjustments for Special Needs, Autism Spectrum Disorders, some Learning Disabilities, and those with visual, speech, hearing and obvious mobility impairments.
What is an adjustment?
An adjustment is a measure or action taken to assist a student with disability to participate in education and training on the same basis as other students. An adjustment is reasonable if it achieves this purpose while taking into account the student’s learning needs and balancing the interests of all parties affected, including those of the student with the disability, the education provider, staff and other students. (2011 Australian Government Review of Disabilities Standards of Education.)
Adjustments for Disabled Students are mandated (under the Disabilities Discrimination Act) and, in some cases, funded (for some disabilities only, in some states). Adjustments can only happen where disability can be proven. To not provide appropriate, reasonable Adjustments in circumstances of special need because of a medical condition results in Discrimination.
So…There are some critical issues tied up in the term “Disabled”.
It is confronting to admit that “my child is disabled by their medical condition”, but how will you feel on the day your child’s term grade is significantly lower than you know they can achieve? How will they feel as they struggle along?
We must reflect, then, on the knowledge that the child has been absent from school much of the term, nobody has provided work or additional assistance, extra time for tests and assignments, consideration that they have had bigger issues in their life? The “System” that records the marks, writes the reports, times the exams, standardises the test scores, quantifies your child’s achievements doesn’t automatically take their illness into account. We have to tell the system to Adjust, rather than expect that from the child.
The formal recognition of “Disability” — use of the term, if you will — allows that to happen.