Making the decision to attend college when you are dealing with a rare disease can be difficult. There are so many factors that you have to consider that other students don’t such as accessibility for adaptive equipment, housing accommodations, support with classes and managing your energy to get through each day. Below are frequently asked questions about navigating the college experience that can help ease the stress of what should be an exciting time for you!
We are going to visit some colleges that I am thinking of applying to. What should I look for when I go to visit the campus?
Each college is going to be different regarding their approach to disabilities so as you go to the colleges to tour them, stop by the disability resource office and ask questions about how they would handle your needs. If the school doesn’t have this office, then talk to someone in the student affairs office. Students at smaller schools have said they can be helpful as well. You will want to get connected with this office even before the school year starts so that any accommodations you have are addressed before classes begin, such as a note taker when absent, tape recorder, wheelchair accessible classrooms.
Also, take note of how far apart the dorms are from the classrooms, how large the campus is in general, how easy it would be to navigate if you had a wheelchair, etc. Think about your particular situation and your needs when you are walking around.
Should I take full-time classes when I start my freshman year in college?
My suggestion would be to start out slowly during your freshman year. You can catch up later if your health allows. Taking just one or two classes the first semester and building up to taking more if you can tolerate it will give you the feeling of success. I have seen many young people try to start out full time, which leads to difficulty if their illness is unpredictable. Some of these young people have had to drop all of their classes because they found it too difficult to keep up. Taking a few classes the first semester allows you to test the waters before jumping in. When I started college, this worked really well for me since I could see how much I could handle and then I could add more classes depending on how I felt. This is an individual preference, but it seems to work well for many young adults with illnesses that are unpredictable in nature.
Are there any organizations or services that can help me at college or when I get a job?
Once you turn 18, you will be eligible to receive services from the Office of Vocational Rehabilitation (OVR). They help with career counseling for people looking for jobs who have illnesses or disabilities but they also help with college needs, as well. They provided me with monetary help for college books, transportation to college, and bought me a scooter and lift for the car to help me get around at work. They can help provide accommodations at colleges, such as communication devices, so that students can learn more effectively. Each state has its own OVR office.
I get tired really easily from walking and the school I am interested in has a big college campus. Do you have any suggestions for making it easier to get around without tiring out?
Fatigue and decreased stamina are issues that I currently struggle with, but weren’t as much of an issue in college as they are now. Now, through OVR, I have a scooter that I can use for long distances. OVR paid for this for me since it is a necessity for me to be able to work successfully. Similarly, if a scooter enables you to be successful in college because it saves you energy, then it may be something you would be eligible for. The thought of riding around the college campus in a scooter may not be considered cool in your mind, but if it allows you to succeed and saves you energy for paying attention in class or doing something fun later in the day, then it is worth inquiring about it.
What if I have a scooter or a wheelchair but I am not sure how to navigate the campus with it in the snow?
I haven’t used my scooter in the winter yet so I can’t offer many personal suggestions, although I do know of others who have physical disabilities who are in wheelchairs and have lived in the dorms in the winter. One student said that she gave the Office of Students with Disabilities a copy of her class schedule and in the winter the maintenance people would clear the paths that she would need to get to her early classes first so that she would be able to get there without too much trouble. She said that it was still hard, but she managed to be able to get around since the paths were usually cleared.
I am on medications that decrease my immune system and make me more susceptible to infections. Should I ask for a private room in the dorms?
Yes! Ask your doctor to write a note stating very specifically why it would be dangerous for you to have a roommate. If they have private rooms saved for upperclassmen, push for one of those. If your doctor can justify why you need a private room for the safety of your health, the school should make every effort to provide you with the necessary accommodations.
I had my own room in college when typically people always had roommates. I get IV nutrition so in college I got 6 boxes of medical supplies every two weeks that needed to be stored. There was no way that I would have been able to fit all of my supplies in half of a room with me and the rest of my stuff, so they gave me a full room. We had to fight for it, though. Also, if you are in a wheelchair or a scooter, you can request a handicap- accessible room, which may be private because you will need more space to store the wheelchair or scooter.
What if my school doesn’t offer note taking or other services in the classroom?
Under the ADA, they are required to offer any necessary accommodations to help you succeed in the classroom. When I missed classes in college, I had a note from the Office of Students with Disabilities saying that I needed a note taker, but rarely used this note since I found that other students were really open to helping out. After a few weeks of being in college, you will get to know some of the other students and become friendly with some of them. These people are usually understanding when it comes to sharing notes due to absences. It also may help to know who the good note takers are in the class. Who gets good grades or who looks like they have neat notes? This is helpful when you aren’t there to take notes for yourself.
Will I lose my health insurance if I don’t take classes full time or work full time?
The insurance that I have has something called a handicapped-dependent status. For my insurance, if you inquire about it before the age of 19, they will keep the “handicapped child” on the parents’ health insurance indefinitely. Some insurance companies may go up to 22 so this may be worth asking about even if you are older. The way this has worked for me is that I was declared handicapped-dependent through my insurance when I was 18 and it didn’t matter how many classes I took in college or if I was working. Regardless of whether I was able to work or in school, the health insurance continued. Even now, I work very part time and my insurance is still under my mom’s name through the handicapped-dependent program and I am almost 27 years old. I don’t need to work full time to get the health insurance benefits since I already have them through this status. From my understanding, this is a lifetime program and I will always be covered under this current plan, which is under my mom’s name, until I hit the lifetime cap and then it can be transferred into my name. This has allowed me to take classes and work at my physical capability level and not have it dictated by insurance. Each insurance plan is different so this may be individual to each company but it is definitely worth fighting for if you are still young enough to qualify. If you call your insurance to ask about this, specifically ask about the handicapped dependent status qualifications.
I want to have a part-time job during the summer but am not sure what kind of job I would be able to handle because of the stamina and pain issues I have that are associated with my illness.
When thinking about applying for a part-time summer job, some questions to think about are: Have you done any type of volunteer work before or had a part time job in the past? What worked well for you? What kind of areas are you interested in majoring in college? Finding a job that would compliment your interests for your future, but also wouldn’t be too taxing on you, might be a good way to solidify the interests you have. Finding a volunteer position that you’re interested in is a good way to start. This way you could gain experience in an area you likes that’s within your capability level without the pressure to be an employee with added expectations. Focusing on what you can do instead of what your limits will help you be successful.
What should I tell my employer during an interview or after I get a job?
It is always good to be honest with employers about your limitations from the get-go. You don’t have to go into detail about your health problems, but if your illness affects your ability to do the job, then your employer needs to know this upfront. If you can do the job, but need some accommodations to help you do it well, then the employer also needs to know this when you go for the interview or get hired. Under the Americans with Disabilities Act (ADA), as long as you can perform the duties of the job, then it is the employer’s responsibility to make reasonable accommodations for you. Some people don’t like telling the employer during the interview about their health problems because they are afraid they won’t get the job if their employer knows about their limitations. Whether you tell the employer then or after he hires you is your choice, but in my experience, it will make your ability to work in that environment easier if you do this from the start rather than waiting until a health issue arises. Oftentimes, the employer appreciates honesty rather than being surprised later on.
Do you have any final thoughts on how to choose a college?
I would suggest sitting down with the Disability Office staff at any schools you are looking at and talking to them about what kind of accommodations you think you would need. Based on their responses, I would take that into serious consideration when choosing the school. Their actions are going to make your stay there a lot easier if they are more accommodating. When I started out at college, I went to a suburban campus of a large university. It was 30 minutes from home, which was far enough away that I could be independent but close enough that I could call my mom in an emergency. It was a smaller campus so it was pretty easy to get around there and since the school was smaller, they gave their students more individual help and attention. Sometimes starting out with a suburban campus of a larger school is helpful. Then, after the student is an upperclassman, he/she can transfer to the larger campus.
The most important thing is to figure out what works for you, since each school, each student and each health problem is different. Thus, responses to each of these questions will vary depending on the student. But, the bottom line is to be persistent in getting the right kind of assistance for your individual needs.