Getting through college can be hard, harder still for those with a mental health condition. From deciding to disclose a disability, to advocating for accommodations, to navigating leave and reentry policies, the journey can be so fraught with challenges that 86% of students with serious mental illness won’t ever finish. Supporting these students is also challenging for college administrators who have been deluged with a related yet different problem of dealing with the increased prevalence of anxiety and depression being reported by the larger student population.
Between 20 and 30% of college students have a mental health condition that qualifies them for community mental health services, yet experts say there is a dearth of literature on how colleges, particularly four-year institutions, should support students with serious mental illness and too few best practices to share. Underlying these efforts is the complex nature of these invisible conditions in young people who are also in an active developmental stage marked by identity formation.
While acknowledging it’s complicated, advocates believe the biggest barrier to addressing serious mental health issues in college is the continued discrimination, misinformation, and fear that exists around this population. As more students with mental illness enter college, and even more experience the onset of their illnesses during their college years, schools will need to explore new ways to help these students persist, including coming to terms with institutional bias.
The Pathway to Career
The Transitions to Adulthood Center for Research at the University of Massachusetts Medical School is an academic research center focused on examining and promoting practices that support young adults with serious mental illness in this critical stage of life. Based on a psychiatric rehabilitation model, the center’s work addresses issues unique to this population, including their transition from child to adult, service systems, and the importance this developmental stage has on lifelong outcomes. Its Director, Maryann Davis, Ph.D., says the goal of helping this population live independent, fulfilling lives is greatly boosted by completing postsecondary education or training.
“When you consider the income and lifestyle advantages of those with a college degree over a high school degree, we are particularly focused on persistence and college degree attainment for this population,” she said.
Davis says the work that has been done in K-12 with students with serious emotional disturbances (the disability category used for this younger population), has resulted in huge increases in those who graduate from high school and enter college. While this is good progress, she says, those entering college face a host of challenges because, unlike public secondary schools that have a legal obligation to identify students with disabilities and provide educational accommodations, that onus is on students themselves to request educational accommodations in college. These students are, however, much less likely than students with other disabilities to request needed accommodations. This is due to a conflagration of factors including the discrimination that many with mental illness experience which reduces their comfort in declaring this disability. The result is often repeated attempts at staying in school with stops and starts that add to students’ stress levels and financial troubles.
Davis’ colleague Kathryn Sabella recently published a paper in the Psychiatric Rehabilitation Journal describing the experiences of 55 young adults between the ages of 25 and 30 with serious mental illness in Massachusetts.
“The majority of the young adults I interviewed had tried college and but had never been able to complete a degree,” said Sabella. “That’s what we see with this population. Many will dabble with college, take a couple classes here or there, try a different school, but when they encounter challenges, mental health related or otherwise, they shut down. And unfortunately, university policies often mandate that even if you don’t complete a course, you still have to pay tuition for those credits, which also sends many spiraling into debt for credits they didn’t even receive.”
Those who did graduate usually took between five and five and a half years. The duration, Sabella says, is not the issue, as long as they continue to make progress toward their goal. To do so, Sabella concludes that these students need more hands-on academic support and more flexible classroom environments. But making this happen is challenging from both a system perspective and a personal one. Not only are there very few specialized programs specifically for students with serious mental illness, the students themselves are often unwilling or unprepared to identify that they need help.
“Most mental health conditions are diagnosed by the age of 24, so usually the diagnosis is happening in high school or college, so that young person is still figuring all that out – ‘What does bipolar mean? What does that look like for me?’”
We educate students that this is a health condition that you have. Some of you will have this for the rest of your lives and you will learn how to take care of it. You will graduate. Your will work. You will fall in love and you will parent.
Sabella says the continued stigma and prejudices that exist around having a mental illness are strong influencers for this group: “They don’t want to think of themselves as having a mental illness, particularly at a time when they, like everyone in their age group, are trying to figure out their identity.” As a result, only about 20% of students with a mental illness disclose a disability and therefore receive academic accommodations.
Michelle Mullen takes this into account when recruiting for a pilot program she directs for students with serious mental illness called HYPE on Campus, a program within the Transition to Young Adulthood Center.
“Young adults do not respond to the term “mental illness,” said Mullen. Instead of asking students ‘Do you have a mental illness or psychiatric disability?’ we ask questions that capture the functional implications of conditions like ‘Are you struggling to get your work done?’ Or ‘Do you have trouble getting to class?’” Casting this wider net identifies students who are silently struggling with mental health diagnoses by focusing on the impact of the conditions. Students with mental health conditions do not see themselves as “disabled” and typically do not reach out for help through offices of disability services.
Changing the narrative on what it is these students need to succeed is the foundation of HYPE, aka, Helping Youth on the Path to Employment, a supported education program that teaches executive functioning skills and provides coaching and service coordination for students with mental health conditions. It is currently being piloted at a state university in New York with plans to expand the program to more campuses across the country.
“When we asked students what was getting in the way of them finishing the semester, we assumed that their mental health symptoms would be at the top of the list,” said Mullen. “That was how we were trained. But that was not the case.”
Mullen said the barriers the students identified were related to executive functioning – issues like time management, concentration, prioritization, organization, and stamina. Surprisingly, grades were not the problem and data show that students with serious mental illness do quite well academically. It was the effort to stay in school that overwhelmed this population of students, a phenomenon Mullen calls “white knuckling.”
“These students are just hanging on every semester for dear life as they try to get good grades, while the personal effort that is required of them to perform well causes such emotional exhaustion, which in turn could exacerbate their symptoms, and lead to taking semesters off or not successfully completing the coursework required for that semester. We see this as the ‘crash and burn cycle.’ Students are bright enough to be at school, but many do not have the advanced level of executive functioning skills to persist in college,” she said.
Mullen also noted that for students with mental health conditions, including mood disorders and anxiety, advanced executive functioning skills may be delayed due to impacts of the condition to the frontal lobe, as well as the lack of opportunity early in life to develop the skills required to manage college expectations.
Mullen and her colleagues realized that building off of historical assumptions and data did not paint the whole picture for this population. This “aha” moment led her to focus on developing an intervention to focus on executive functioning skill-building and coaching while deferring to counseling centers and/or community supports for their mental health treatment.
After a comprehensive needs assessment, HYPE uses a compensatory, cognitive remediation approach over 12 sessions to teach and reinforce foundational skills and strategies to build a sophisticated set of cognitive tools for these students. HYPE on Campus does not duplicate existing services, but rather works as a bridge between counseling, disability, career services and other supports on campus to help students utilize existing services effectively. Coaches help students stay engaged and on track. Because coaching is provided by graduate student interns, program costs stay low, underscoring the argument made for the return on investment yielded through retained tuition.
Mullen points out that students with mental health conditions are considered to be the most rapidly growing population on campus, and the most likely to drop out, which should provide motivation for higher education leaders to address the gap she says HYPE can fill.
“In thinking about this from an equity and justice perspective, if any other population group had an 86% dropout rate, what would we be doing? I think we’d be calling for specialized services to be provided to ensure they can maintain a connection to college,” she said.
Part of the Campus Community
As advocates like Mullen promote supported education as a vocational pathway, students with serious mental illness who are studying more broadly – many at highly competitive institutions across the country – face similar challenges.
Stefanie Lyn Kaufman-Mthimkhulu (she/they) graduated from Brown University in 2017 and is the founding Director of Project LETS, a peer support and disability justice organization for students with mental illnesses with campus chapters throughout the country. LETS (for Let’s Erase the Stigma) builds peer-led communities of support, education and advocacy for students with lived experience of mental illness, trauma, disability and/or neurodivergence.
Kaufman-Mthimkhulu says the labels that most accurately describe her lived experiences are autism, ADHD, complex post-traumatic stress disorder (C-PTSD), and major depressive disorder, with experiences of altered states (mania/”psychosis”). She founded LETS while still a student at Brown and her experiences there are reflected in the organization’s mission and programming.
“I spent four years at college having many uncomfortable and discriminatory conversations with professors and administrators who questioned my need for accommodations,” she said. “These exchanges would pile up until what was once a microaggression felt overwhelmingly macro.”
Kaufman-Mthimkhulu blames a disease-focused health care system and an ableist society for creating many of the hurdles students with serious mental illness have to face on college campuses. She says the struggle to get the help, make the grades, and stay in school can be life-dependent for students given all that’s at stake, particularly for students on scholarship, or those that can’t just “go home and get better.”
She spoke of the “burden of proof” that is put on students who, in some cases, have to submit elaborate testing data in order to receive academic flexibility, something that becomes even more discriminatory for lower-income students. “It all starts with viewing these issues through a very specific medical framework where you have to be pathologized just to get some help,” she said, noting that her own diagnosis has changed over the years, with different doctors giving conflicting opinions at various stages of her life.
Kaufman-Mthimkhulu believes the experience during COVID-19 where non-Disabled students and faculty moved swiftly to online learning was particularly telling. “One of the biggest things we saw with COVID was that we have always been able to do what Disabled, mentally ill, neurodivergent students have been begging for,” she said. “It’s not that we didn’t know how to do it, it’s that we didn’t want to do it.”
Kaufman-Mthimkhulu, now 26 and married with a daughter, is working with Mental Health America to better understand what post-COVID accommodations will look like for students with serious mental illness and is expanding LETS programming to the community. Regarding college mental health, she is hopeful that faculty and administrators will see the benefit of exhibiting the humanity they may have gained through the experiences of the last 18 months.
“It doesn’t have to be these big structural changes, though a lot of things have to change,” she said. “Sometimes it can be a tiny, interpersonal thing that makes all the difference, like having a professor say ‘I believe you. You don’t have to explain to me everything that’s happening here. Take your time.’”
One of Kaufman-Mthimkhulu’s biggest supporters at Brown was Counseling Center Director, Will Meek, whose liberal interpretation of policy allowed for some of the most creative strategies in college student mental health. Meek is now the Global Director of Mental Health & Wellness at Minerva University, a highly selective four-year institution combining rigorous academics with an immersive global experience.
Meek believes supporting students with serious mental illness has gone under the radar of college administrators for a variety of reasons, starting with the tendency for colleges to quickly move these students into community-based services. “Problem number one is it is not thought of as the responsibility of campus resources to support somebody with these kinds of needs and conditions, so all of a sudden, they are kind of ‘othered,’” said Meek.
Meek says fear is what often drives how colleges respond to students with serious mental illness – both in terms of liability and comfort level. “These folks don’t always conform to community standards, so it often becomes a conduct or behavioral issue even though it’s a health condition that can be managed and supported.”
Meek believes colleges can support these students on campus with the right approaches, including educating campus community members about the various conditions these students present with. “If we explained more about the kinds of patterns we can see in people with severe bipolar, with psychotic features, or schizophrenia, we can support these folks in a way that doesn’t always have to be this ‘high alert’ response.” One of the most important elements of this strategy, said Meek, is forging a close relationship between counseling and disability services and then working together with other campus community members so that these students stay above the radar and get the help they need.
The University of Maryland’s Counseling Center is set up precisely for these reasons. Counseling Service, Accessibility and Disability Service, Testing Office and Research Office all report to the Director, Dr. Chetan Joshi. This allows the Center to provide research-based, comprehensive care to students along the behavioral health continuum, including those with serious mental illness.
“College can be very, very difficult for students who are experiencing these chronic mental health conditions,” he said. “Trying to manage all of the academic rigor, all of the social demands, and a mental health condition, just becomes an incredibly difficult challenge.”
Based on his experience at UMD, and previously at the University of Connecticut, Joshi sees these students as among two camps: those who need to leave campus for a higher level of treatment; and those who remain on campus with several pathways to support. In both cases, Joshi says he utilizes a case management approach where he brings all stakeholders to the table, particularly family members, to review the options and create a plan for the student. For those who remain on campus, this involves tight coordination with other campus community members – be it academic affairs, residential life, disability services, or counseling. For students who take a leave of absence, Joshi says the support continues.
“I’ve seen students whose basic functioning was so disturbed that it was really not possible for them to continue on campus, yet even under those conditions, there are things we can do to support them and get them to where they need to go and then come back in a way that will help them thrive,” he said.
Joshi notes the importance of ongoing communication with the school, home and student. “The last thing we want is to have families say, ‘We have not had any contact with anyone at the university.’ That just makes the reentry issues that much more anxiety-provoking.”
Retaining students with serious mental illness hinges largely on the policies that govern the leaves of absence they often take to manage an acknowledged diagnosis or better understand the onset of a new one. Dori Hutchinson has made supporting students who take leaves of absence a major focus of her work at the Boston University Center for Psychiatric Rehabilitation, a research, training, and service organization dedicated to improving the lives of persons who have psychiatric disabilities.
The Center has education and coaching services for colleges, including a program called NITEO (Latin for bloom or thrive), which is a semester-long program that prepares students to return to higher ed after a leave of absence. With support from the Ruderman Foundation, it has recently issued a set of guidelines on leaves and reentry policies for both students and administrators that speak to the policies’ intent – to use these periods as restorative breaks with plans that allow you to return well. But, as Hutchinson points out, these policies vary significantly among institutions and not everyone takes Dr. Joshi’s approach to staying connected.
“Many of the leave policies, probably not purposely, have had a very real way of punishing students for having a mental illness,” said Hutchinson. “You’re told to go home and take care of your mental health. But maybe there’s no home. Maybe there’s no resources.” Hutchinson says the alienation these students feel while disconnected from campus can exacerbate their issues.
“Some policies mandate that students have no contact with anyone on campus. What kind of a message does that send a kid who has now lost their academic home/status and their social collegiate identities? ‘You are less valuable. You have failed,’” she said.
Hutchinson said she and her team created NITEO to fill a gap in the age-appropriate programming options that were available to students once they were on leave. Begun in 2014, NITEO brings students together to create a community. During the semester-long class, students work on wellness management, executive functioning skills, and resilience. They work together on barriers like test anxiety or difficulty attending class in peer-supported groups which lets them know they are not alone.
“We work hard on building resilience. We educate students that this is a health condition that you have. Some of you will have this for the rest of your lives and you will learn how to take care of it. You will graduate. Your will work. You will fall in love and you will parent. These are messages that they are not always hearing from other people.”
Eighty percent of the students within the NITEO program return to school and complete their education.
As Hutchinson and her team at BU continue to help colleges and universities interpret policies in a way that works for both school and student, she says the strongest message she would give to administrators is about inclusion and justice.
“Schools need to say ‘We care about all of you – not just some of you. We don’t just care about those who make it through without a mental health problem, or those that are privileged. We care about every single one of you and some of you have more challenges than others.’”