For parents like Audrey, watching their kids discover newfound independence at college is profoundly rewarding.
His mother Audrey says, “It really is the best thing that has ever happened to him, and to us, because they take care of everything that worried me about sending him to college. It has been so wonderful because he is encouraged and enabled to do things himself, and for better or worse, there’s always a responsible adult around in case he needs one. At this point, we are so happy that he is there and that he is feeling independent. He has a peer group of other students who have major disabilities. They’re all intelligent kids, they’re all getting on with their lives, and it’s kind of like this whole band of young people, who are like, “OK, so I got a problem. What’s your problem?”
Stephanie D. Lollino, executive editor of FacingDisability.com, is a television producer and writer who has worked with the website since its inception. Her extensive background in research, media and creative communication turns the task of improving the lives of others into a dream job. “Making people aware of SCI and everything that goes along with it is something I’m really proud to be a part of.” For more information from FacingDisability.com on going back to school, visit www.facingdisability.com/spinal-cord-injury-videos/education.
• Centers for Independent Living, www.ilru.org/projects/cil-net/cil-center-and-association-directory. Located nationwide, CILs are a great resource for finding personal assistants, learning the accessibility of a new city and more.
• FacingDisability.com, www.facingdisability.com/spinal-cord-injury-videos/education. Although primarily operating as a resource-packed website, FacingDisability.com has other programs as well and can be reached by phone at 312/284-2525.
• United Spinal Association, 800/404-2898; email@example.com, www.unitedspinal.org. United Spinal has hundreds of chapters and support groups across the country that can be tapped as part of your support system.
Visit the Campus
“I would encourage people to reach out and meet students at your prospective school, see where you’re going to live, get an idea where the dining hall is, things like that,” says Everett Diebler, 31. Everett, who has CP, attended Millersville University near Lancaster, Pa., and has a bachelor’s in psychology as well as a post-baccalaureate certification. “Be sure you know where your classrooms are going to be, check out the housing halls. These are things you might not get a sense for when you’re on a tour.”
Have a Support System
“My family was within an hour away, and the Hershey Medical Center was close by,” says Paul Fogle, 31, who has a bachelor’s in public policy from Penn State Harrisburg. He has a pulmonary disability and uses a scooter for mobility as well as a ventilator at night. “If there was an emergency, I would call my family.” If your school is far from family or your own doctor, be sure to create a new support system, whether it be friends or getting support from a local United Spinal chapter or Center for Independent Living.
Have an Assistance Plan
As Molly discovered, most colleges and universities offer no help securing personal assistance services or aides. Therefore, it is best if you have your services in place before you show up on campus.
If you receive personal assistance services, speak with your current service coordinator and let them know where your school is located. Some Medicaid-funded programs will allow you to keep your services uninterrupted even in other states, and will help you to coordinate with a local agency.
Paul says he already had personal assistance set up and just needed a large enough living area to accommodate his aide. “Penn State has pretty conducive housing arrangements for folks needing attendants,” he says. “My dorm room was like an apartment suite, so there were four single bedrooms, one common living area, a kitchen, bathroom and living area. It was pretty big.” His attendant did not get a bedroom, but since she was on duty at night, it didn’t matter. “She hung out in the living area and it worked,” he says.
Get to Know the Office of Disability Services
It’s best to meet with your school’s Office of Disability Services a few months before you’re due to show up on campus. This is when you’ll discuss what accommodations you’ll need, such as ensuring all of your classes are held in accessible buildings. The school will ask for medical documentation, and usually a letter from your doctor or a copy of your high school individualized education plan will do the trick.