Coordinated care in higher ed

At first glance, Deyven Ferreras looks like a typical university student: youthful face, college sweatshirt, backpack.

But until recently, his backpack carried more than books. Quite literally, it was his lifeline. Inside was a left ventricular assist device (LVAD), a mechanical pump that helped his weakened heart move blood throughout his body.

Ferreras, a second-year student at Bentley University in Waltham, Massachusetts, is believed to be the first college student in the United States to have lived on-campus with an LVAD. Still, Bentley officials initially had some concerns about accommodating him.

“My nurse practitioner and cardiologist told me that when they first talked to Bentley about my condition and heart device, they said ‘no’ because they didn’t want to be liable in case something happened,” says Ferreras, who was accepted to the college before he developed end-stage heart failure. “But my health care team set up a meeting so everyone could see me, including the chief of police and health services people. I guess they were shocked by how normal I looked.”

The university’s hesitation in accommodating a student with a life-threatening condition was understandable. Until Ferreras received a heart transplant this March, he relied on a machine to live. His energy fluctuated with his health, and he had to perform daily sterile dressing changes. Yet he was determined to continue his studies at Bentley, and equally determined to live on campus.

“My diagnosis and LVAD didn’t change my mind whatsoever,” says Ferreras, who was doing well academically when he had to break from his studies for the transplant.

Increasingly, colleges and universities enroll students with a wide array of physical and mental health conditions. And many institutions, like Bentley, aren’t quite sure to how address those needs.

Campuses often have many older, not easily accessible buildings. Legal guidelines that put the onus on students to request accommodations—plus the departmentalization of services—can make it difficult to come up with a coordinated plan for a student.

Yet across the nation, colleges and universities are finding ways to accommodate complicated health needs, allowing students like Ferreras, as well as many with more common health issues, to live and study on campus.

Legal considerations

The Americans with Disabilities Act and Section 504 of the Rehabilitation Act require institutions of higher learning receiving federal funds to provide accommodations for students with identified disabilities.

Under the law, a disability is a “physical or mental impairment that has lasted longer than six months and substantially limits one or more major life activities,” such as seeing, hearing, eating, sleeping, walking, standing, learning, communicating and concentrating, says Claire Hall, an attorney who has served as legal advisor to a university. She currently works for UECAT Compliance Solutions, a Rhode Island-based consulting firm.

The catch: Students have to disclose their disability or need for accommodation; if the student has not done so, the school is under no legal obligation to provide services, even if the need seems obvious. In fact, assuming a student has a disability can get colleges in trouble—it’s a form of discrimination, Hall says. “Even if they see the student struggling, until the student says, ‘Yes, I have a disability, I need help with this,’ you have to work with the student in the same manner you’d work with anyone.”

In college, unlike in K12, the onus is on students. “When students are in high school and elementary school, the school determines what they need and provides it,” Hall says. “When students move into college, it’s up to the student to contact the institution and request any services they might need.”

Student identification

It’s good practice for institutions to touch base with students who have indicated on health forms that they have a chronic condition. In most cases, it will be the head of the campus health center, or another campus health representative, charged with connecting with students. 

Gerri Taylor, a board-certified nurse practitioner who is director of Bentley University’s Center for Health and Wellness, makes sure that all students know that she is the point of contact for anyone with medical needs.

“I suggest that anybody with a chronic health problem contact me or come in,” Taylor says.

Many students will not need services on a regular basis. Students with diabetes and asthma, for instance, can usually manage their conditions independently, and rarely require special accommodation. But even a simple sickness—a bad cold or bout of stomach flu—can trigger health complications and the need for special care. Meeting with students prior to their first year allows staff to brainstorm sick-day solutions and emergency plans with students before there’s a medical emergency.

At many institutions, information about campus services for students with medical needs is included in campus tours and admissions information. To facilitate a smooth transition, the college encourages students to meet with health care personnel before the beginning of the school year.

At the University of Missouri, students are asked to schedule an appointment with the Student Health Center Medical Director during summer orientation. At that meeting, the student, family and director “outline a plan for how their medical needs will be met,” says Dr. Scott Henderson, director of medical services at the university.

To ensure continuity and coordination of services, all Mizzou students with identified medical needs have an assigned care provider (typically, a nurse practitioner or physician) whom they see for all health center visits.

They are also shown how to contact staff in times of need, and signed up for the university’s Patient Portal, a digital health care communications system. That system allows students to quickly and easily communicate concerns and questions to campus health providers, and to track health information.

Multidisciplinary planning

Because each student will have unique needs, it’s important to create individualized care and accommodation plans. Bentley University staff set up a meeting between Ferreras, health services and emergency personnel, Taylor explains. Ferreras’ nurse practitioner from Boston Children’s Hospital, Beth Hawkins, educated university personnel—including resident assistants, residence life managers and local emergency workers—about his care and how to operate his device.

The planning involved Bentley’s police chief, Ernie Leffler, setting up meetings with staff of the ambulance service, the Waltham policy and fire departments, and his own officers and staff.

Health center staff, campus police and upper management in the Residential Life department received LVAD training; residential staff taught resident assistants. Campus health staff met with the local emergency personnel too, to let them know about Ferreras’ residence on campus and teach them about his device. Everyone learned that Ferreras was on the waiting list for a heart transplant and worked out a plan to get Ferreras to Boston immediately if needed.

Ferreras, health staff and residential life staff figured out an appropriate housing situation. Because his device had to be charged at night, Ferreras needed access to reliable electricity.

He wanted to room with other freshmen his first year, but none of the first-year dorms have backup generator power. So he was given a room on the first floor of a first-year dorm near the Campus Police Center, which has a generator. Both he and the campus police knew that he could call anytime, 24/7, if he needed assistance; they would grant him access to the Campus Police Center to charge the device if needed.

Academic considerations

Ferreras doesn’t require any consistent academic accommodations, but many students do. At the University of Cincinnati’s James L. Winkle College of Pharmacy, a fan is placed in classrooms for one student who has a body-temperature regulation disorder. And one student with multiple sclerosis is allowed to take oral exams.

The university also routinely records all classes, so any students whose medical conditions prevent attendance can access the lectures via recording.

Institutions should consider student needs in internship and clinical training sites as well. “We can’t always control what happens in those environments, but we work with students to try to help them be successful,” says Andrea Wall, a registered pharmacist and the associate dean for student and alumni affairs at the pharmacy school.

If medications control a student’s symptoms and allow them to function more effectively, health staff will “work with them to get their health to where it needs to be so they can be successful,” Wall says. This holds especially true for students with mental illnesses such as depression and anxiety, who are referred to the health center for assistance.

The school also works with clinical training sites to accommodate health needs. If a student has difficulty standing for long periods, for example, the training can be extended so they don’t have to spend eight or nine hours a day on their feet. Administrators will make sure the student realizes, however, that the accommodation could result in taking longer to graduate.

Medical leave policies

Sometimes, despite the best laid plans, a student will need to take a break from his or her studies. Ferreras missed the first semester of his sophomore year of college after antibiotic treatment for an infection damaged his vestibular system and, hence, his ability to move safely. Because the university was aware of his situation, his tuition was fully refunded. The university also held his room for him. (Tuition insurance, which generally costs $100 to $1,000 per year, is another option for students with chronic health conditions.)

Medical leave policies apply to students with mental health issues as well.

The medical leave policy at Ithaca College in New York, for instance, states this: “Students who must leave the College because of medical or psychological conditions that necessitate their absence may request a medical leave of absence. Documentation of the serious nature of the medical condition must be provided to the health center. Approval must be given by the director of health services and the Division of Student Affairs and Campus Life (in consultation with the counseling center when it is a psychological condition).”

At Cincinnati’s college of pharmacy, students on medical leave can return to training when their physician affirms education can be safely resumed. And at Ithaca and some other colleges, students must apply for readmission through the college health center and get approval to re-enroll.

Managing the chronic health needs of students may seem overwhelming at first, but it’s often not as burdensome as first assumed. “I know there’s a lot of fear that comes with it,” Ferreras says, adding that everything was fine during his year-and-a-half at the school when he had the device. “Bentley really helped make things easier for me.”

Jennifer Fink is a Wisconsin-based writer and a registered nurse.