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Enrolling in university or TAFE is often an exciting time. New possibilities and opportunities abound. While living with CF while studying can present some challenges, support is available.

Catherine, who works as a Disability Advisor for Western Sydney University, has some advice on where and how to find that support. 

Most teenagers with invisible, chronic illness such as cystic fibrosis hate the word “disability”. I get it. I’ve been there. The “D” word isn’t something that you necessarily want plastered on your resume or Instagram account. But when it comes to receiving support in higher education, whether it be TAFE or university studies, it’s important to know what the word disability means, and how disability services can help you to reach your full potential.  

Under the Australian Disability Discrimination Act (DDA), the definition of disability is broad and includes chronic medical conditions. It also includes other invisible illness, such as learning disabilities (for example, dyslexia) and mental health conditions. The DDA specifically says that any education provider must provide reasonable adjustments to a student who discloses they have a disability. The DDA is the same reason some high school students get “special provisions” during their VCE or HSC—however, at university adjustments can be broader than just exam provisions.  

At university and TAFE, the way to receive reasonable adjustments is through the Disability Service. At different institutions the disability service may be called by a different name, for example: student equity, or accessibility service, or student welfare. But no matter the name, they still need to abide by the legislation as set out in the DDA and provide reasonable adjustments in order to support you. Ticking the disability box on your admissions form does not mean that you are registered with the university’s disability service – you still need to contact them.  

It’s much better to be proactive about this—introduce yourself to the disability staff prior to semester when you are well and before you get too busy with uni life. That way if you do get sick, or need some extra support, they already know who you are.

University is very different to school, and at uni the disability service does not need to disclose to academics (the fancy name for lecturers and teachers) what your diagnosis is. In most cases they simply communicate what reasonable adjustments are required to support you. Whether you receive support from the disability service certainly does not appear on your final grades or transcript either, so employers don’t have to know. The Disability Service can also help to make sure you can meet the “inherent requirements” of a course—these are the core, compulsory parts of a course.  

So what is reasonable? Well, what support someone with CF needs will be varied and it really hinges on how CF impacts upon your studies. Typical impacts for someone with CF may relate to frequent and unexpected absenteeism, difficulties meeting deadlines, lethargy or difficulty concentrating.  

If you have CF-related arthritis then it may be difficult for you to complete hand-written work (including handwritten exams), while people with CF-related diabetes may need other considerations. If you are studying a medical or allied health degree, there may need to be considerations and adjustments regarding your placement (for example, avoiding respiratory patients and all their potential bugs!).  

What reasonable adjustments may be suitable for someone with CF will be dependent upon your individual circumstances including your diagnoses (whether you have CF complications or mental health conditions too), how your condition impacts you (including the burden of your treatment regime), the course you are studying, the mode (online, face to face) and a few other factors.  

What support someone with CF needs will be varied and it really hinges on how CF impacts upon your studies. Typical impacts for someone with CF may relate to frequent and unexpected absenteeism, difficulties meeting deadlines, lethargy or difficulty concentrating.

It is best to contact your future university and book an appointment to talk with a disability advisor about your options. It’s much better to be proactive about this—introduce yourself to the disability staff prior to semester when you are well and before you get too busy with uni life. That way if you do get sick, or need some extra support, they already know who you are.  

Be prepared that you will need to provide some medical documentation to verify your condition(s) and how this affects you. Be upfront: the more they know, including information about depression or anxiety, the more they can work with you to help you achieve your goals.  

And one last note—don’t worry if you are planning to study at Western Sydney University as you can easily avoid me (for cross-infection purposes). I have many lovely colleagues who’d be happy to hear from you!  

 

As a provisional psychologist, Catherine works as a Disability Advisor for Western Sydney University. She is also a wife, proud mum of two and is undertaking study in postgraduate psychology. Catherine has CF—so she knows the struggles of fitting the CF regime of physio, nebs and exercise into daily life. 

This article was first published in the CFCC Community Focus Magazine in November 2019 and republished on CFStrong in May 2022. If you would like to share your story, please contact us at [email protected]. We’d love to hear from you and so would our readers.