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Continuing Your Education

by Daniel Smith

Continuing your education with ME/CFS/FM can be a challenge in the fast paced world we live in. Thankfully, modern education providers are better equipped to accommodate disabled students than ever before. With alternative entry pathways and disability support staff at most tertiary institutions, there are now more avenues to educational success available to students with ME/CFS/FM and other chronic illnesses. Remember that continuing your education is like a choose‐your‐own‐adventure novel: there is no set path.

Developing an education action plan

This is one of the most important and most daunting steps in continuing your education. You need to sit down and decide how and when you will complete the various components of your overall education. Education plans should be realistic in terms of your unique situation and the limitations it brings. This can be an emotional exercise for many as the full realisation of your limitations and their implications hits you. Remember that by making a plan you are taking control of your life, not having your illness control it for you. Once you have an overall plan in place, you can review it at the start of each semester or year to make sure it is still suitable to the present situation. As your illness fluctuates it may become necessary to change your plan. At the start of each semester, when it comes time to choose subjects, you will need to put a lot more thought into it than the average student. Consider things like days, times and locations of classes, how many contact hours are required and how much extra reading is required. If you are in doubt check out the school’s website or contact the lecturer, they will be happy to help you. It would be a good idea to contact the disability officer at your institution for their advice on subject choices. Make sure you choose only subjects that you feel you can reasonably complete, and make sure you don’t choose too many at once. As you complete subjects or semesters, cross them off your plan. There is nothing more satisfying than crossing things off to‐do lists!

Completing high school

If you become ill with ME/CFS/FM in high school, there are several options available to you. You can finish high school and get the HSC, study the HSC by distance education or at TAFE, forget high school and move straight to studying at TAFE, or study some units in TAFE and use them to enter university. If you want to take some years off to rest, you can enter university as a mature age student without an HSC. There are several options available to help you complete the HSC with ME/CFS/FM. When you first become ill, it is important to speak to someone at your school (for example your year advisor or school counsellor) about your medical and educational needs to come up with an educational action plan. Here are some of the options available:

HSC Pathways is a scheme in which a student can complete their preliminary (year 11) and HSC level (year 12) courses over more than two years. This is done by “accumulating” your subjects over the years towards the eventual award of the HSC and a UAI. The accumulation period can be between three to five years, starting from the first year in which a HSC course is studied (this means that preliminary level courses completed before the five‐year period are also eligible). At the end of each year you will receive a “record of achievement” listing all courses ever attempted. The normal pattern of study (at least 12 preliminary units and 10 HSC units) is required, and must be completed by the last year. So it is very important to have a realistic education action plan to make sure you attempt enough units by the end of high school.

Distance education may be more appropriate for students with more severe ME/CFS/FM. The school usually responsible for distance education for medical reasons is Sydney Distance Education High School (SDEHS). When doing a subject through distance education, work is sent to you at home or school to be completed and sent back to be marked. The great advantage of distance education is flexibility - work can be completed at your own pace, in your own home (or bed!) at any time of the day or night. You can choose to do all your subjects through distance education, or you can enrol in one or two subjects in conjunction with those at your high school. You will need to speak to your year advisor or principal for more information on how to enrol in one or two subjects, or contact SDEHS directly for full enrolment.

HSC exam provisions are available to students with disabilities in preliminary and HSC exams and, at the discretion of the school, school based exams and assessment tasks. The Board of Studies’ Assessment Certifications and Examinations Manual explains examination provisions available and application procedures. This publication is must-read for all HSC students to help you understand the processes and what you are entitled to. Briefly, provisions are available to students who, in a normal examination situation, have trouble “reading the examination questions and/or communicating his or her responses”. At first glance these may seem too narrow to be of any use to an ME/CFS/FM student, but remember that being unable to concentrate and being too exhausted to sit up for the whole exam obviously affects the ability to read questions and communicate responses.Provisions may include large print papers, use of a writer, use of a reader, extension of test time, rest breaks, use of a personal computer, establishment of a special test centre, exam supervision, individual supervision, permission to take medication, or other provisions as judged appropriate. To apply, you will need to talk to your school counsellor, year advisor, or principal.

HSC courses are also offered in many TAFE colleges across the country. While studying the HSC at TAFE you can still access the HSC Pathways scheme and exam provisions. This may be a good option for the mildly affected ME/CFS/FM student as the programs are often more flexible than high schools. You may also be able to obtain a limited UAI—one calculated on five units of study rather than ten—through TAFE.
It is an unfortunate reality that some teachers or principals are unhelpful or disbelieving of students’ limitations. If you come up against opposition in your school, remember that you are entitled to these provisions and options. If, however, your school is not able to accommodate your situation, you may need to consider changing schools, completing the HSC through TAFE, or following a different course of action.

Applying for university with your UAI

Once you have completed the HSC, either through your high school, distance education, or TAFE, you will be given the option of receiving a Universities Admission Index (UAI)—the rank used by universities in offering places. Students are given the choice not to receive a UAI but it is recommended that you get one, even if you do not plan on attending university, because you never know if your circumstances will change. Applications to most universities in NSW and ACT are handled by the Universities Admissions Centre (UAC). You can lodge a single application with up to nine course preferences, although some universities require direct applications for some courses.

When filling out the UAC form, it is vital that you indicate your disability status. It will not affect your application in any way, but you will be sent a questionnaire about your particular situation so that UAC can notify any university that you accept an offer from.

If your UAI is not high enough for your chosen course, don’t worry, there are many options available to continue your education: you can enter a similar course (with a lower UAI requirement) and transfer after a year, you can enrol at TAFE and re?apply after a year on the strength of your TAFE results (often you will be granted credit for TAFE subjects you have successfully completed), or you can undertake a university preparation program to gain entry as a mature age student (aged over 21).

Mature age entry to university

If you are over 21 and have not studied any other tertiary study, you can enter university as a mature age student. Most universities require that you complete a “preparation course” of some kind—whether delivered through the same university, another university, or TAFE. These programs provide important skills needed in tertiary study such as effective essay writing, time management, and note-taking skills. They run for either six or twelve months. Many university courses allocate places for mature age students, while some will not allow any mature age students, so it’s important you check the requirements for the course you want to do. You can find this information at the university’s website, or UAC’s website.

Once you get to university or TAFE

The first thing you should do is contact the disabilities officer on your campus. Even if you are feeling well at the beginning of the year, it’s important to let them know about your situation while there is time to develop plans and work out your needs (or potential needs) rather than dump a problem on them when disaster strikes.

Some services provided at most institutions are:

  • enrolment assistance: helping you skip queues on enrolment days,
  • note-making assistance: a note-taker can take notes in lectures, meaning you can concentrate on the speaker, particularly important if you suffer from brain-fog,
  • examination provisions: such as rest time, separate supervision, snack breaks etc.
  • advice on alternative assessment depending on your chosen course,
  • access to on-campus disabled parking (often you will need a Mobility Parking Scheme (MPS) parking permit from the Roads and Traffic Authority ),
  • library assistance, access to assistive technology, access to resource rooms for students with disabilities,
  • access to rest rooms,
  • liaison with academic staff: if you have problems with any tutors or lecturers they can help you work out a solution.

It’s important to keep in contact with the disability officer throughout the year. Let them know if you are absent for any reason, they can speak to your lecturer to waive any attendance requirements if you are in danger of failing a subject for that reason alone.

The cardinal rule of ME/CFS/FM applies here: pace yourself! Here are some other ideas:

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