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Disclosure and Life on Campus

Since 1990, the Individuals with Disabilities Education Act (IDEA) placed responsibility on elementary, middle, and high schools to identify students needing special educational accommodations. However, IDEA does not apply in higher education.

Nevertheless, as a post-secondary education student, you are entitled to services and accommodations through Section 504 of the Rehabilitation Act of 1973 and the Americans With Disabilities Act of 1990. These laws prohibit colleges and universities, however, from searching for information on a student’s disability status. As the student, therefore, you can decide to disclose, or not disclose, your bleeding disorder and seeking any special services you may need. The laws also ensure that you will not be discriminated against by a school because of your disability.

For more information on rights and services, go to Section 504, Rehabilitation Act of 1973 and The American Disabilities Act of 1990.

Remember, it’s your responsibility to know your rights as they relate to various aspects of your higher education. These include:

  • Admissions
  • Scholarships
  • Employment
  • Financial aid
  • Work study
  • Roommates
  • Course of study
  • Sports

By doing a little bit of research and finding out the school’s policies, you’ll be better able to get what you need and deserve out of your higher education experience.

You may or may not want to disclose your disorder during the admissions process. Remember, no school can ask you if you have a disability or medical condition. However, talking about your bleeding disorder and how you have faced challenges related to your bleeding disorder may be an interesting topic for an admission essay.

Although sharing information about your bleeding disorder with people you don’t know very well may be difficult, you may want to tell a few select people (your RA, roommates, friends, and maybe your advisor and professors). Wearing your medical alert bracelet or neck chain may provide an easy way for you to start the conversation.

Telling Your RA, Hall Director, Roommate, and Friends

If your school allows you to self-infuse in your dorm room and you decide to do so, it’s important to tell your roommate and RA, and maybe the students who live near you as well. If your roommate is not comfortable with the idea of you self-infusing in the room, you may want to consider looking into changing rooms or roommates. You can talk to the Office of Residential Life and/or the Office of Disability Services to find out about school policies on changing roommates. Also, you may want a friend or RA to have access to your dorm room (and to understand your bleeding disorder) in case you need someone to bring your factor to an emergency room.

If you self-infuse in your dorm, a roommate, RA, or friend who does not know about your bleeding disorder may think you’re using illegal drugs!

Telling Your Advisor and Professors

You may want to tell your academic advisor and your professors in case you miss any classes due to health reasons. Some schools and professors have strict attendance policies.

If you miss class often, your professor may assume you are simply skipping and give you a poor grade.

Disclosure in an Emergency

Having a plan In Case of Emergency (ICE) is a good idea and will most likely require you to involve people close to you in your daily school life. Think about whom you want to tell about your bleeding disorder and how each of these individuals should be involved in your ICE plan. Maybe if you are at a school far away from your home and family, you will choose your roommate or RA to be your ICE contact.

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Life on Campus

Living on campus can be exciting—meeting new people, participating in new activities, attending school events. However, campus life can sometimes be frustrating—a roommate you don’t get along with, a dorm room that’s not like what you’re used to at home, and, don’t forget the campus food! But with a little advance planning, you’ll be ready to enjoy campus life or know where to go to find information and help.

Before School Starts

Meet with the school’s Office of Disability Services to set up any assistance you may need. The Office of Disability Services can provide information about whether you will be able to store factor products and self-infuse in your dorm room, special transportation options offered by the school, and academic assistance if you need to miss class or require special accommodations.

You will most likely register for your classes before you arrive at school. If there is limited or no transportation to get you from one class to the next, you may want to talk to the Office of Disability Services to see if you can create a schedule that is less likely to place strain on your muscles and joints.

Meet with the school’s student health center staff. If you will not be able to store factor in your dorm room or if you do not self-infuse, make arrangements ahead of time to have your factor shipped to and stored at the school’s health center.

Set up your factor delivery. If your factor will be shipped directly to you and not to the school’s health center, speak to the mail services staff about refrigerating any factor products that need to be kept cool. Make sure you’re notified as soon as they arrive. You should schedule deliveries of your medications and supplies with time buffers built in so you don’t run out.

Storing Your Factor and Supplies at College

Factor is climate sensitive and should be stored as directed by your pharmacist or health care provider. In a typical dorm room fridge, you might find pizza, open beverage bottles, and old leftovers. This is NOT a good place to store your factor. You don’t want to attract mold. The food forgotten in the fridge is a breeding ground for mold and other undesirable organisms! Also, the more often the fridge is opened and closed by you or your roommate, the less stable the temperature.

The best place to store any factor products that need to be kept cool is in a separate refrigerator in your room. The Office of Disability Services may be able to arrange this for you.

If the power goes out, don’t open the door of the fridge where your factor is stored!

Items in refrigerators may keep cold for a few hours as long as the door stays closed.

Find out your school’s policy on sharps disposal, or work with your Hemophilia Treatment Center (HTC) to figure out how to properly dispose of your sharps containers.

Emergency Kit

You may want to put together an emergency kit with specific items and tell a roommate, friend, or someone who you can easily contact how to access it.

Here are items that should be in your emergency kit:

  • First aid supplies
  • In Case of Emergency (ICE) numbers
  • Medical history (on thumb drive)
  • Tourniquet
  • Needles
  • Syringes
  • Sterilization products
  • Styptic pen

Setting Up a Support System at School

You can find support from many different places at school. If you’ll be using a new Hemophilia Treatment Center (HTC) close to campus, they can help. Your campus medical center, RA, hall director, professor, advisors, employers/supervisors, or friends are all potential resources for help. You may find that the Office of Disability Services is your number one go-to for support. Don’t forget to keep in touch with old friends via your favorite technology and social networks.

Other Considerations as You Adjust to Life on Campus

  • Investigate class registration options such as early registration
    • This is a good plan if you need to attend classes in certain buildings or locations that are accessible to you
  • Know the local hospitals and which one to go to
    • You can speak to your new Hemophilia Treatment Center (HTC) about this, and find out if they have run any bleeding disorders training with that hospital
  • If you plan to participate in work study, investigate the choices early to determine if you will need special accommodations
  • Be aware of the requirements for your major (physical challenges)
  • Look into sports and recreation hours and services
    • Many schools have club, intramural, division teams
  • You may want to contact a local bleeding disorder organization that can offer support and provide information on social events and volunteer opportunities
  • Know what counseling services are available