Cecilia Reyes was 20 when she was diagnosed with multiple sclerosis.
Then a student at DePaul University’s College of Liberal Arts and Sciences, she was overwhelmed by a feeling of disconnection with professors and fellow students, and struggled to get the support she needed from the student disabilities office. “I look healthy,” Reyes explains. “I have trouble walking when I get sick. But other than my speech right now” – she was having some difficulty talking last Thursday morning – “I look pretty normal.”
“I explained everything to the office but sometimes I think if I put a cast on my arm, someone would know that sometimes things are wrong with me.”
After needing to drop courses and nearly losing $10,000 in tuition (which was ultimately refunded), Reyes, now 24, transferred to DePaul’s School for New Learning , a school focused almost exclusively on adult students but also home to the unique Chronic Illness Initiative , a supportive, flexible program for the growing cohort of college students (of any age) facing chronic health conditions.
“Before I found out about the program, I really thought that was going to be it, that I wouldn’t be able to finish,” says Matthew Morgan, a 2006 DePaul alumnus who completed his degree through the Chronic Illness Initiative after being diagnosed with chronic fatigue syndrome as a DePaul junior. “I couldn’t work, and I couldn’t go to school in any traditional way. That was really hard to bear, because I was so close to getting my degree.”
About 200 students are enrolled through the Chronic Illness Initiative, a four-year-old program that has doubled its size in the past academic year. Meanwhile, the number of individuals with chronic illnesses continues to increase. The Centers for Disease Control  reports that about 1 in 10 Americans face major limitations when it comes to day-to-day living because of chronic conditions -- the leading cause of death and disability in the nation.
And a June Journal of the American Medical Association article on "The Increase of Childhood Chronic Conditions in the United States" by Harvard University researchers James M. Perrin, Sheila R. Bloom and Steven L. Gortmaker, cites a number of sobering statistics about the prevalence of chronic illnesses among children and adolescents: Among them, that the proportion who face activity limitations for long-term health reasons has increased from 1.8 percent in 1960 to more than 7 percent in 2004.
DePaul's Chronic Illness Initiative
“One of the biggest problems [students] have because of the nature of chronic illness is this waxing and waning problem. They may start the term feeling they can manage it and a couple of weeks in they have a relapse or a hospitalization,” says Lynn Royster, the director of the initiative. Students come to the program – which can be completed entirely online or on campus (or through a combination) – with a whole range of conditions, including cancer, chronic fatigue syndrome, diabetes, epilepsy, heart disease, fibromyalgia, lupus and rheumatoid arthritis.
But, Royster says, “Almost all of them have the same kinds of needs. And almost all those needs are not met by traditional disability offices, because what [chronically ill] students have is the unpredictability.”
Traditionally, a disabilities officer will work with a student at the beginning of a semester to figure out what accommodations will be needed – a note taker or books on tape, for instance, Royster explains. “With our students, it changes all the time. We get an occasional request for a reader, but most of our requests arrive because a student has fallen behind or had a relapse.”
“It’s really hard for them, because they just want to be like everybody else. They just want to take a full load like everybody else and unfortunately it doesn’t always work," adds Paula Kravitz, assistant director of student services for the Chronic Illness Initiative.
Students take regular courses of study, and if they don't fall ill or need extra support from the initiative, simply complete their coursework like any other student at the School for New Learning. Students in the Chronic Illness Initiative aren’t required to take a minimum course load and have no time limit on completing their degrees (however, minimum course loads required for federal financial aid eligibility and, as Kravitz points out, for remaining on their parents’ health insurance plans, can compromise the flexible program design).
Beyond the built-in flexibility of the program, staff serve as advocates for students if they become ill or hospitalized during the course of a class and are unable to complete the work on time. “Once you step outside the norm,” Royster says, “the bureaucracy can be overwhelming,”
Students are not required to inform faculty of their chronic conditions in advance, though they are encouraged to – and the initiative has even produced a form letter students can modify and hand to faculty if they are uncomfortable having that type of conversation. In the event something goes wrong mid-course, initiative staff can work with DePaul’s “exceptions committee” to consider a range of options – which can include class withdrawals or incomplete grades (which depends on the instructor being willing to commit to a continuing relationship with the student), and the option to apply completed coursework toward a future “independent learning pursuit” -- basically an independent, credit-based project for advanced-level School of New Learning students that they complete with a faculty mentor and adviser, as Kravitz explains.
Royster says that the initiative is developing more formal policies about student responsibilities if they become unable to complete their class-work mid-course, and notes that “the student’s own approach to it makes a difference.”
Chronic Conditions and the College Campus
Nationwide, many colleges do have protocols in place to deal with the unpredictability that comes with chronic disease -- when students come to them, of course. Many prefer not to.
At the University of Kentucky, for instance, Susan Fogg, the disability accommodations consultant, says that for students who come to her with documentation of chronic diseases, she'll send letters to relevant faculty members informing them that that the students have conditions that could require them to miss class. Fogg -- who is seeing an increase in the number of chronic illnesses on campus, with 25 new students reporting cases of ulcerative colitis or Crohn's disease to her this fall alone -- says she believes Kentucky's policy is typical.
“In situations where attendance is required, we really don’t have the power to change university policy," which stipulates that faculty members can fail any student who misses more than a fifth of class meetings at their discretion, says Fogg. "But I have been able to work with some faculty here who are very laid-back and easy-going and can find alternative ways that students can get credit.”
"Students with lupus or arthritis and then HIV, different kinds of chronic illnesses or conditions, have always been present and campuses ... have been addressing their needs individually, either through the disability office or maybe individually, an instructor with a student," says Richard Allegra, director of professional development for the Association on Higher Education and Disability .
Yet, he adds, "In everyday practice, a lot of attention is focused on students with learning disabilities or [attention deficit hyperactivity disorder], the students who need interpreters, these kinds of really obvious things. A person with chronic illness might get lost in the shuffle a little bit also because of the nature [of conditions] like MS. One semester the student might be fine and not need any accommodations" and the next semester that could change, Allegra says.
"It's interesting that DePaul is saying 'Let's not forget these students.'" The Chronic Illness Initiative, Allegra says, reminds him of specialized programs other colleges have historically formed to serve deaf students or those with learning disabilities above and beyond what federal disability law requires of them.
Patricia Fennell , an author of several books on chronic illness and CEO of Albany Health Management Associates , a think tank of sorts focused on chronic conditions, says that, generally speaking, it's her sense that on the chronic disease front, colleges "need a lot of help."
Fennell says she's seen cases in which college disability offices view chronic conditions through the frameworks of conditions they’re already familiar with: One college-level patient of hers with a closed head injury, for instance, was offered accommodations as though she had learning disabilities. Which she does as a result of the trauma, Fennell says, but “she really didn’t need to have longer time for exams."
Because of the pain she was experiencing, “she needed a part-time course load and they were having a great deal of trouble wrapping their brains around that. They were accustomed to a certain set of frameworks and they were anxious about expanding those frameworks,” Fennell says.
“In fairness to the higher ed folks, we’re all taken by surprise by the number of people with chronic conditions. We as a culture are simply not prepared for this. Everybody’s scrambling.”
Fennell, who is in negotiations with DePaul to work on some curricular projects for the Chronic Illness Initiative and who spoke at the initiative’s spring symposium this year, hopes that the DePaul program becomes a model for other colleges. She knows of no other program like it.
In addition to offering the academic support and several courses designed with chronically ill students in mind (like "Advocacy and Self-Determination," which Royster teaches), DePaul’s Chronic Illness Initiative also offers a “Buddy” program that pairs old-timers in the program with newbies, and a discussion board.
The initiative just hired a part-time research associate in August, and has aspirations to develop a strong research arm (even a center) and, perhaps with the help of Fennell and Albany Health Management, create an inter-disciplinary certificate program in chronic health issues. A fourth annual symposium -- this one focused on linking educational and clinical perspectives -- is planed for May.
This fall, the initiative hosted the first “meet and greet” for students in the Chicago area. Students, however, live all over the country (given the online option) Royster says, and the number of inquires keeps increasing.
“A good number of our inquires” – about 40 percent, Royster guesses – “result in people enrolling. I think that’s because there’s no where else for them to go.”