It’s back-to-school time, and this year the student living with pediatric MS is moving up to college. On many college campuses throughout the country, classes have already begun or are about to begin. Students are extremely excited to greet the new year, but some might be a bit nervous or concerned that physical limitations may get in their way. When you live with multiple sclerosis, you may need to request appropriate and reasonable accommodations to better overcome those challenges.
Previously, parents and school administrators worked together to develop a plan for necessary accommodations to help you succeed at school. However it is during the college years that you will learn to become your own advocate. It becomes your responsibility to know where and how to request the services you need.
Disabilities Services Office on Campus Every college or university has a disabilities services office; this is your starting point. If you have been living with disability when you are admitted to college, register with the disability services office prior to the beginning of the first academic semester (only if you need to request accommodations). For first-year students, registering during the school’s orientation program helps to ensure that accommodations will be in place on the first day of the semester. Keep in mind, however, that you still must be able to meet a program’s admission, academic, and technical standards (i.e., all essential nonacademic admissions criteria) either with or without accommodation.
If your MS progresses or flares during college, your needs may change. Often mobility, dexterity, fatigue and overstimulation may create challenging situations on campus. You may have trouble writing and need extra time to complete tests or assistance with note taking during class. You may need a distraction-reduced testing environment. You may have difficulty typing and need access to a school computer equipped with voice recognition software. You may have difficulty traveling from one class to another and need more time to do so. You may be physically limited in the mornings, or fatigued at certain times of the day, and need to avoid classes at those times. You may need a close parking space for easier campus access. You may need an accessible dormitory, with air conditioning and refrigerator.
The U.S. Department of Education shares that "academic adjustments may include auxiliary aids and modifications to academic requirements as are necessary to ensure equal educational opportunity." Examples of academic accommodations/adjustments which may be arranged include priority registration; reducing a course load; substituting one course for another; providing note takers, recording devices, extended time for testing; and equipping school computers with screen-reading, voice recognition or other adaptive software or hardware.
You must learn to self-advocate. You will need to monitor your changing needs and any disabilities which develop, long-term or temporary. You are responsible for contacting the disability services office to request the services you believe you need; the college or university generally does not provide accommodations unless or until you ask. Your college will probably require current medical documentation (which you will need to provide) which includes a diagnosis of your current disability, detail on how your disability affects a major life activity and/or how your disability may affect academic performance. Additional information may be required. Be ready to follow established procedures to request an academic adjustment.
When I think of what it would be like to have attended undergrad with my current level of MS disability, two things comes to mind. Heat and distance. I attended the University of Oklahoma, which has a spacious campus. The music department was at the opposite end of campus from the dormitories. That long walk would certainly be a challenge in the Oklahoma heat. Even without MS (at the time) I requested a dorm with air conditioning and was able to install my own small refrigerator.
All music education majors were required to spend at least two years in the marching band. I would have requested a substitute requirement be made. With the help of administration and professors, I’m sure that we would have come up with a suitable solution. You may be able to adjust required course load to better match your abilities and limitations. Keep in mind, however, that your college is NOT required to lower or substantially modify essential requirements. They do not need "to make modifications which would fundamentally alter the nature of a service, program or activity or would result in undue financial or administrative burdens."
Be Your Own Best Advocate The Minnesota State Colleges and Universities shares excellent recommendations on self-advocacy and student responsibilities which begin with knowing yourself and your disability. "You need to know how to talk about your disability in a way that other people will understand." This truly is important. They also suggest that you develop a plan and practice communicating your needs. Perhaps practice explaining the accommodations you believe you will need with a friend before you approach your professors.
The ability to advocate will benefit you in your life and career. Do not be afraid to speak up and voice your needs and concerns. There is nothing shameful or embarrassing about stepping forward and making your physical and academic needs a priority. And certainly have a great school year!
Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.