Many Disabled, Chronically Ill Students Entering College Lack Support
Editor's Note: The Children’s Health Matters blog is a space dedicated to sharing important new research, policy ideas, clinical findings and journalism on child health and development. It’s part of our effort to spur a conversation online and off that offers a rich and varied set of perspectives. As part of that mission, this blog will feature a new column once a month with insights offered by two of Children’s Hospital Los Angeles’ leading community-based research teams.
The first of the two groups is made up of community-based researchers who are tackling pediatric health challenges stemming from obesity and diabetes. Our other group of Children’s Hospital L.A. contributors is focused on severely ill children who are aging out of pediatric care and the services and benefits that formerly supported them.This post is from clinical social worker Liz Morasso, a member of the second team of contributors.
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Like most 19-year-olds, I craved independence and chose a college far from home. However, one thing that set me apart from others my age was my diagnosis of rheumatoid arthritis and eventually, systemic lupus. Getting into the Catholic University of America in Washington, D.C. with the support of academic scholarships was my way of saying: I can do it all, despite having a significant disease. That was even my college’s tagline: Do It All!
A few weeks before finals at the end of my sophomore year, I suddenly found myself struggling to speak, was hypersensitive to light and sound, and I was anxious about leaving my dorm. Within a few days, I was in intensive care with a diagnosis of Central Nervous System Lupus, or Neuropsychiatric Lupus – a strong, independent college student’s worst nightmare.
I have always prided myself on my ability to talk my way of out anything, even in the face of physical challenges. Now I had suddenly lost my ability to speak or write – a symptom caused by the swelling of blood vessels in the brain and spinal cord – with no one able to tell me when this terrible dream would end. Once the initial shock wore off, I couldn’t help but think of school. Fortunately, chemotherapy and stronger immunosuppressants had put me on the road to recovery. But did my professors know where I was or what had happened to me? I returned to discover that I received incompletes in all my classes, lost my scholarship and had to start the semester and the same classes from scratch. I also learned that had I registered with the school’s office of disabilities, a resource available to all students with a chronic illness, I would not have had to spend the next two years fighting to regain my academic good standing. I never recovered my scholarship. I fell through the cracks not only because I knew little about the disability office but because, had I known more, I probably wouldn’t have sought it out. I was a kid, feeling invincible, fiercely independent and unwilling to acknowledge I might need help.
Today, as a clinical social worker at Children’s Hospital Los Angeles who now works with teens and young adults living with chronic illness, I regularly struggle to find information on services and eligibility criteria for the estimated 6% to 9% of high school students with a disability who are about to make the transition to college. Most disability offices clearly define eligibility for students with physical, sensory or learning disabilities and mental illness. But it’s far less clear how these services and resources pertain to students with chronic illness, especially illnesses that manifest themselves episodically or invisibly. The disruption caused by such illnesses can be devastating for students without support and accommodation from their school.
A key barrier to my enrolling in my college’s disability office was the simple word “disability.” I had never considered myself “disabled.” According to a 2005 U.S. Department of Education longitudinal study, about half of those with disabilities enrolled in post-secondary coursework did not define themselves as disabled. Outreach from the Office of Disabilities at my school was geared towards those with learning disabilities or formal transition plans, which I never obtained. The service didn’t seem relevant to me. My perception of disability was not unlike that of many other 18 year olds: Disabled students relied on wheelchairs, were visually impaired or were students who needed someone to take notes for them. I didn’t fit into any of those categories when I enrolled. The Department of Education survey also found that 40 percent of students in their study did not inform their schools of their disability.
Some of the young people I work with have suggested they are able to “silence” their condition and so have no reason to inform the disability office in their university of their potential need for accommodation. Most still see themselves as immune to the consequences of risk-taking.
In the 2012 Disabled Students Report released by California State University system, disabled students were found to have lower graduation rates (46.9% vs. 51.7%) and persistence rates (55.3% vs. 59.2%) compared to students without disabilities. Without active efforts to better support all students eligible for disability services, many young adults will be denied the opportunity to enjoy a full college experience and realize their academic and life potential. Our society can’t afford to lose the potential wealth of human and social capital this population can offer.
As a clinician, I have found that the younger the interventions begin, the better the chances the patient will actually use school resources. Advertising a college’s disability services office as a tool for success starts with middle- and high-school counselors, medical providers, and other support programs, such as transition-readiness interventions, which prepare patients for both transfer of care to an adult health care facility and assists with the transition to adulthood.
Schools also need to more clearly define what “disability” looks like in their student population, and student-led or social media campaigns may persuade more students to seek out support services. DePaul University’s Chronic Illness Initiative, for example, provides support tailored to the needs of these students and should be a model for programs nationwide.
Schools and federal regulators should develop greater accountability, oversight and creativity in support services for students with chronic health conditions. Although existing law outlines some basic requirements for schools receiving federal aid, most accommodations and programs are optional, based on the student population and the school’s own assessments. Ideally, the process of enrolling in services for “disabled” students should be as easy and stigma-free as signing up for a meal plan.
Image by Anna L Martin via Flickr