Finding the right school for you
For many, going to college is part of their game plan in life. But when muscle disease also is part of the game, there are disability-specific issues to consider when choosing the right college. This article and "Want to Go to College?" provide tips about college application and selection to help make the whole process a little more accessible, and lead you to a winning finish.
Eyes wide open
There’s no special formula for selecting a college, but planning ahead and extensive research really go a long way in making the process easier and less stressful.
You’re going to spend four, maybe five, years of your life in college, so you want to choose the right one that fits your needs as a student and as a person with a neuromuscular disease.
“When deciding on a college, you have to pick and choose and weigh what’s most important when it comes to issues like accessibility, degree programs, cost and everything that you want to get out of college life,” says Matthew “Mo” Gerhardt, MDA’s 2007 National Personal Achievement Award recipient and a Michigan State University graduate.
Other considerations include campus housing, availability of personal care attendants, parking, transportation and more.
“It’s so overwhelming for every college student, but then you throw in everything that goes along with having a disability, and that makes it twice as overwhelming, stressful and challenging,” says Gerhardt, 29, who has limb-girdle muscular dystrophy.
Here are some college-selection tips from current students and graduates with neuromuscular diseases.
Do the research
Because your future is riding on this fact-finding mission, start collecting information about each school early — some say as early as the summer prior to your junior year in high school.
Autumn Grant, 32, who has limb-girdle muscular dystrophy, is director of the Center for Academic Achievement at Stonehill College in Easton, Mass. She cautions, “You can’t just jump into it and expect it to all work out. There’s a lot of planning going on.”
Start by locating information about the college’s academic programs and the availability of disability support services. Consult books, magazine articles and college Web sites, and request college viewbooks via mail or see them online. Viewbooks provide a colorful, albeit limited, look at the campus, the school’s top academic and research programs, campus life, athletics and the surrounding community.
It pays to attend college fairs and open houses on campus to learn more about what’s offered. Those are good opportunities to interact with staff and other students who can point you in the right direction.
Sherry Santee, a physical therapist in the University of Arizona’s Disability Resource Center in Tucson, advises students to contact a university’s disability resource center when they’re high school juniors, if not earlier.
“Students should start a dialogue with the staff very early in the process,” Santee says. Having a relationship with the disability office makes it easier to convey personal needs, ask questions and make arrangements for special accommodations. If possible, visit the disability services office in person; face-to-face interaction helps the staff remember you and your needs.
It’s also important to ask about specific documentation required by the university in order to be eligible for services, and (once the selection has been made) to fill out paperwork for accommodations quickly.
Grant emphasizes that it’s important to “know your disability” in order to find a college that suits your individual needs. As you make contact with various schools, you’ll have to explain your disability repeatedly and convey your needs to the disability services staff effectively.
Keep track of all correspondence and conversations with university staff members and maintain good notes, in case of a future conflict or problem with your accommodations.
If at all possible, make several visits to the campus to ensure that accessibility means the same thing to the college as it does to you.
Santee recommends arranging campus tours through the disability services office, which can be more specialized than general campus tours. Ask to go into buildings assigned to your major field of study as well as accessible dorm rooms. Note the functionality of elevators and ramps.
Even then, it’s hard to know for sure. Grant toured three college campuses before deciding on Northeastern University in Boston, which has a good academic program, as well as a large disability support services department and a number of students with disabilities.
“When I toured the campus, it seemed like the accessibility of the buildings was good,” she says. “They had working elevators, and I could get through the doors with my wheelchair.
“But after I got there, I learned differently. Their interpretation of accessible and my interpretation of accessible were quite different.”
For one class, Grant was forced to enter the building through a loading dock, and “I didn’t feel safe doing that.” Grant also found herself scheduling classes based on accessibility and not on her academic interests. She had a difficult time getting staff to change building assignments if she didn’t have enough time to make it from one class to another.
Grant, who later transferred to Providence College in Providence, R.I., offers this lesson: “Knowing that I was a science major, I should have toured the science buildings.”
Gerhardt, who says his number-one concern was accessibility, visited 15 to 20 college campuses before making his selection.
“I made it a point to get on the campus, see it with my own eyes and experience the level of accessibility for myself,” he says.
While researching schools, Gerhardt read a publication recommending the University of Kentucky in Lexington as “one of the best in terms of accessibility.” But during his tour, Gerhardt found it to be “one of the worst.” The elevators weren’t big enough for him to turn around in his wheelchair, and the admissions office had a hard time referring him to the college’s disability office.
“It was one major disappointment, so take what you read with a grain of salt, and actually go tour the campus, and see what it has to offer firsthand.”
Should you choose a college simply because it’s more accessible than others? Not necessarily. The accessibility factor has to be weighed against other factors, like academic and social programs.
“It would be pointless if you attend a fine arts school, and you don’t have any interest in fine arts,” Gerhardt says. “I wanted to be able to get a degree that was going to be respected within my field, or else there really wasn’t a point in spending all that money and going through the whole process.”
“New and different” was a priority for Abby Albrecht, who didn’t want to attend school close to home. Albrecht, who has type 2 spinal muscular atrophy, visited almost 10 colleges in California before falling in love with the University of Southern California in Los Angeles because “it had majors that really interested me and access to things that most of the state schools didn’t have.”
“I was kind of foolish back then and expected a lot more help [from the school],” says Albrecht, 31. What she found is that schools may not volunteer help with disability issues, requiring students to be both proactive and stubbornly determined. Albrecht recommends working closely with your academic department and the disability services staff to ensure your needs are met.
For example, if you want to enroll in a class that’s located in an inaccessible building, you have to speak up and demand a building change. Don’t be shy because you must be your own best advocate.
It took almost a year and constant communication with several college departments for Albrecht to locate accessible housing on campus. “It’s time-consuming and you also have to question whether it will work for the long term,” she says. Albrecht is now a USC alumna with a degree in journalism.
By contrast, Janna Leach, a recent graduate of Louisiana State University in Baton Rouge, knew from a young age that she wanted to attend LSU. She wanted to go to a bigger city and be independent, and LSU’s large campus offered many more opportunities than a smaller college close to home. However, after touring all of the available residence halls, none of them accommodated her needs.
“The rooms were like boxes, and once all of my equipment was in the room, there was no room to move around,” explains Leach, 23, who has SMA2. “The bathrooms weren’t fully accessible, and with LSU, the dorms are very old, so I was worried that the heating and cooling systems wouldn’t be very good, which is important for someone with a neuromuscular disease.”
Determined to uphold a family tradition of attending LSU, Leach found an accessible apartment close to campus and lived there for the first two years. Now, she lives in an accessible home nearby, and has attendants to drive her to and from school.
Steven Graff, 19, who’s affected by congenital muscular dystrophy and recently finished his first year at the University of Maryland in College Park, says, “I went about selecting a college like any normal kid. I looked for schools that had the academic programs that I wanted, and then I looked at the accessibility factor.”
Graff selected Maryland because it has the best biomedical engineering program, not because it was the most accessible school in the state. While he’s faced some challenges with the school’s paratransit system and locating a PCA, Graff doesn’t regret his decision. The academic program simply mattered more, so it’s been worth it, he says.
Planning for PCAs
Finding a personal care attendant (PCA) is a common source of stress for students with disabilities. Do your homework and learn whether your prospective schools offer an attendant care program, or provide assistance locating an attendant.
“I applied to Edinboro because of the attendant care they provide,” says Ryan Ballou, who has Duchenne muscular dystrophy and is a first-year marketing student at Edinboro University in Erie, Pa. “They have 24-hour care and a van service in case of bad weather. It just seemed like the best school for my needs, and it’s not far from my home.”
Ballou, 20, who lives in an accessible dorm room on campus, notes Edinboro is ranked one of the top schools in the country for students with disabilities. He says the attendant care program alleviates a lot of stress by making it easier to focus on studies without worrying about hiring an attendant.
Some schools will refer students to local, state and private agencies for help, but if you hire a non-student PCA, make sure you know the rules regarding PCAs living in the residence halls.
If your college’s disability services are limited, Albrecht advises you to be prepared to go it alone and start your search at least two weeks before each semester begins. You can post flyers on campus bulletin boards like Albrecht, or place ads in the college newspaper like Leach.
“Finding an aide is one of the scariest parts of college,” Albrecht emphasizes. “You’re going to want to hire the first person that calls because you want your mom gone, and you want to start college and be on your own. But be ready to say no.”
Both Leach and Albrecht agree that student PCAs are beneficial because they’re more cost-effective, and you share common issues as students. Leach also recommends older college students or grad students because they tend to be more reliable and responsible.
“I could write a book about this,” says Leach, who’s had five student PCAs per year. “It’s been quite an experience. When I was a freshman, I hired some girls who also were freshmen, and that didn’t work out very well because they weren’t the most dependable.”
Santee advises students to check with their local independent living centers because many provide courses or seminars on interviewing and hiring PCAs. And she recommends that college-bound students “do a trial run and hire someone before going away to college just to get used to another person providing their daily care needs,” especially if they rely on family members for their care.
Finally, always have a backup caregiver plan in case of an emergency or if an attendant calls in sick.
The college selection process doesn’t have to be a nightmare if you do your homework, and make a plan. Figuring out in advance exactly what you want and need in a college is critical to getting it. After all, this is your future you’re talking about.