What Parents Can do
Visit the disabilities office of prospective colleges with your student. Tell them about your child’s illness. This is a touchy subject, but you need to “declare” your illness. Almost ALL students and parents have NO idea that they can be accommodated in some way by using their college’s Office of Disability Services. This is important to “feel out” the office, and to see if they are sympathetic and are willing to help.
Find out what services they have available to help them succeed. Excused long absences, note takers available when you’re not in class, extended time for exam taking. What happens when your student is hospitalized….how do they catch up? Are there policies in place for this?
Visit the housing department. Does your student NEED peace and quiet? Do they need a dorm room of their own? This is important if your student is on chemotherapy.
Visit the school’s medical facility. Some universities have medical facilities or health centers for students to use when needed. They have docs on staff, nurses, etc. Tour the facility, get to know the staff, find out what’s available in case of emergency. Especially if they are far away.
Get to know your professors. Repeat, get to know your professors. These are the folks that you’ll ultimately have to rely on to help you succeed. Some professors don’t understand and think because you don’t look sick, you’re just “lazy”, and don’t show up to class while some professors really do see your plight and want to help you.
Ultimately, services vary from university to university. Generally the smaller universities are willing and able to work with you and make accommodation for your student, but the larger universities are generally very difficult to work with. The chronically ill student gets lost in the system. You’re a number, a seat in the chair. Professors are the gateway to learning the material – however, if you’re absent (whether or not they have signed a letter of accommodation from you), you will most likely get attitude, especially when absent for doctor’s appointments, and even hospital stays. If you miss too much class, then you are “not making satisfactory progress”, you may have to drop classes to keep from failing, or take in-completes. Professors are most times not interested in helping you catch up, the class has already moved on.
This is where you really HAVE to get proactive. It can be very exhausting navigating the university system and finding the correct party to listen to your student’s plight. You and your student need to find an advocate, someone in the system, that can vouch for the integrity of the student, and help pave the way to formulating some sort of plan to guarantee that your student does NOT get left behind. After four years, I actually had to threaten a lawsuit to get action. The American Disabilities Act (ADA) does not have specific mandates for chronically ill students and they get swept under the rug. But our students do qualify for services under the ADA, it’s just under “Other” which really does not help much at all.
By Chris Cosner, April 2013