So I was reading a 2012 report by the National Alliance on Mental Illness (NAMI) recently. Over 750 college students were surveyed, with NAMI attempting to determine views of mental illness among young adults, and the quality of campus services. The report is located here (PDF).
Most interesting to me is the data on disability accommodations (pages 12-13). While there is a lot of current data on students and mental health, they usually focus on counseling services. In that area, the rate of students getting help has sharply increased, though college-age adults remain the group least likely to seek help. This isn’t a terribly good survey in terms of research design, but any information is good.
A couple key insights emerge, which I’m fairly confident would hold in a more rigorous study.
There is a substantial difference between how many people with mental health conditions who know about accommodations, and those that actually use them. About 20 points separate the two.
Disability resource centers are orientated to physical disabilities, and aren’t designed with psychological conditions in mind.
Among those that dropped out of college due to mental health issues, getting accomodations may have kept them in school.
The conceptualization of disability in the United States has created these conditions. This gap between physical and mental doesn’t emerge from modern disability law necessarily, where the definitions are broad and inclusive. Rather, society has yet to shift its perspective on mental illness. Some tendencies:
People discount any claimed disability that is not clearly visible to outsiders. When I served on a county disability commission a couple years ago, a long impromptu discussion broke out during a meeting about people being harassed for parking in the special spaces because they didn’t “look like they needed it.”
The stigma against mental illness and disability are different, and a sizable group of people accept their belonging in the former group but not the latter.
The type of assistance given to people with psychological conditions, including more time on exams, exams in a quiet room, and longer deadlines, may seem unearned by those who qualify. Accomodations otherize. If you take your exams in a different room, or have different deadlines than your classmates, there may be resentment.
Faculty treat psychological accomodations as less important than physical accomodations.
The disability office as an institution is caught in the crossfire. It can be a key part of students succeeding in college, but many people have no concept of mental illness as being connected.
UC campuses received poor scores on the accessibility, diversity, and outreach of their mental health services
This is part two of a series on UC mental health and the campaign to reform it. A previous post outlining areas of concern is located here.
The UC Students Association (UCSA) has released their evaluation of campus mental health resources, part of a new reform campaign (#HowAreYou) which was adopted last August. Three areas were measured: accessibility of the system, diversity of current staff, and extent and quality of outreach.
Results: not good. UC students would be appalled if their own academic grades were this bad. Campuses scored best on outreach, which is the least important of the three criteria. The core issue is accessibility. Diversity among counselors is only meaningful if students can get appointments within a reasonable amount of time- and are allowed a sufficient number of sessions per term. Outreach is key- it destigmatizes mental illness, and plays a key role in the increasing number of college students looking for treatment in the last fifteen years. But effective outreach magnifies accessibility issues. The more students who seek Counseling and Psychological Services (CAPS) or an equivalent service, the more meaningful staff to student ratios become. It’s clear that the rise in demand for counseling and psychiatry is outpacing general student growth and funding allocations.
The increased need by students for campus mental health services has resulted in an overtaxed delivery system at UC that falls significantly short of meeting the actual student demand and expectation for services
The cumulative toll of this shortfall in service capacity has had and continues to have a significant negative impact on all campus populations, including other students, faculty and staff; on the affected individual student’s academic performance; and on that student’s overall mental and physical well-being.
Further, it is the Committee’s considered view that this situation will not improve over time, and indeed given general societal trends can only further deteriorate, without aggressive intervention on the part of the institution. This intervention must include a systematic review of policy, enhanced communication mechanisms, and a renewed commitment to campus-wide collaboration along with an infusion of new resources commensurate with both the nature and magnitude of the challenge now facing the University.
As usual, the issue boils down to money. The reason is the corporate-like administrative structure that ties up over a billion dollars more than is needed to run the UC. A low-cost, high revenue structure will always underfund student services like counseling. This combines with the ‘progressive’ state government abdicating its duty to provide quality higher education. Thus we are told that any investment in students will raise tuition, because in 2016 there is increasingly little difference between private and public universities. Remember how K-12 is a right, but once you hit around 18 education becomes a paid-for privilege? Students and faculty are hostages of a mindset we see in corporations all the time, where investment in people makes the system uncompetitive.
With that out of the way, I’d like to talk about the disability services for students, in the context of mental health. There are several names for this office:
Office for Students with Disabilities at UC San Diego and UCLA;
Disabled Students’ Program at UC Berkeley and UC Santa Barbara;
Student Disability Center at UC Davis;
Student Special Services at UC Riverside;
Disability Resource Center at UC Santa Cruz;
Disability Services Center at UC Irvine; and the Disability Services Office at UC Merced.
When #HowAreYou was first presented in a public meeting at UCSD, I had issues with its depiction of a full coalition of groups and university services. I like the focus on collaboration- as improving mental health is not just about psychologists but peer mentors, wellness education, student groups, resource centers, etc. But mental illness as disability was never mentioned. Laws like 5150 involuntary commitment were mentioned, but the Americans with Disabilities Act (ADA) was conspicuous in its absence.
Updated design of the International Symbol of Access
Under the ADA, the definition of disability (Section 12102) is broad and non-exhaustive. In public perception, the term “disability” has been strongly tied to physical disability. The International Symbol of Access is the image most closely tied to the concept of disability- part of an inherent bias towards conditions that others can perceive and verify. Part of stigma is how people may not perceive psychological issues as potentially chronic or severe.
So let’s turn the three branches of #HowAreYou– accessibility, diversity, and outreach. All of this is based on my own experience, the experience of many friends and people I come across, and hour-long meetings with a case worker who deals with the largest portion of students seeking help with psychological conditions, dedicated to talking about the mental health system.
Accessibility: There are many different accessibility issues inherent in psychological conditions being the basis of disability accommodations. Here are some that come to mind initially:
Especially in cases of mental health, there are few connections between disabilities office and other parts of the university. Professors rarely, if ever, talk about it or put information on their syllabi. It’s seldom a topic of conversation in student groups.
Documentation is difficult for someone with no prior experience.
The ratio of case workers to students leads to logjams early in each term as everyone is trying to get their accommodations set and given to professors.
Faculty may block accommodation requests, which the student must then solve by going back and forth between the office and faculty.
Diversity: The same issues exist here, as it does when talking about CAPS.
Case workers and staff must be equipped to deal with a very broad spectrum of disabilities (movement, deafness, blindness, learning disabilities, anxiety, depression, mood disorders, PTSD)
Students may lack confidence in a staff member without shared experience (for instance, a deaf person may feel their obstacles can’t be fully experienced, or a depressed student may feel their issues are being devalued because it’s not visible)
Students may come from cultural backgrounds that don’t talk about mental illness, and may stigmatize those who have problems. This is brought up frequently by Asian Pacific Islander (API) students, and is relevant with both CAPS and disability services.
Outreach: Stigma is a big factor here, but I’m very insistent here- the stigma of having mental health problems is very different from the stigma of having a disability. So campaigns launched by #HowAreYou will have limited effect if they are only talking about the direct stigma of mental illness.
The disabilities office, like CAPS, is given a very limited slice of time in orientation. With so much information in a day-long event, students are unlikely to follow up with the office if they had heard about it for the first time.
Faculty aren’t trained at all about disability accommodations. Thus they often treat accommodations as guidelines rather than legal rights. If faculty have to go out of their way to meet standards, they will often refuse to honor entitlements.
Many faculty are new to teaching, or from countries that do not have an equivalent to the ADA. So a large chunk of teachers every year will have no prior experience with the system.
Because mental health is usually placed in a therapy/treatment rather than disability context, anti-stigma campaigns rarely address that there are two stages of stigma of mental illness.
The disabilities office rarely has a robust outreach component. They will table at resource fairs and present at orientation, but there is rarely a push to get staff and student mentors in club meetings, classes, and hold events specifically about disability.
It should be said that everything here applies more to psychological disabilities than other types. Many people have no idea psychological conditions are legally disabilities.
So this concludes my second post about mental health in the context of the UCs and the #HowAreYou campaign by the UC Students Association. I welcome any information by those that have experience with disability services and mental health, especially outside UCSD.
My next post will be about the structure of how students give accommodations. An exchange with someone at a community college in Northern California shows that there are multiple ways to go through the process, and I think some are superior to others.
This post is to mark the beginning ofHow Are You at UC San Diego, a student mental health overhaul instigated system-wide by the UC Student Association (UCSA). Mental health for students, from elementary school on through graduate education, is in crisis on a structural level. The toll of mental illness has always been underestimated, and thus few schools have services to match need. Nationwide studies find sharp increases in college students seeking counseling.
Dr. Victor Schwartz in the linked article outlines two potential reasons that campus services are being overwhelmed. Number one, that college students as a population are having more issues than before. Number two, more people with existing issues are seeking treatment, so it’s not the density of the problem but the response rate.
I’m firmly in the camp that thinks reason two is the key issue. In my previous post on student health, “The fantasy of perfection,” I wrote about the crisis that appears when mental illness is viewed as weakness. Society waking to the reality that mental health problems, both acute and chronic, are common features of the human experience is a huge development. So while the present is a challenge on a resource level, it is at the same time an incredible opportunity.
So I’m just going to list nine things that should be considered by the How Are You campaign at the UC schools, and campus mental health campaigns in general.
The introduction of mental health resources to new freshman and transfer students. Existing orientations tend to lump all resources together- first-generation college students, sexual assault counseling, centers for racial and ethnic groups, reporting discrimination, with psychological services and disability services mixed in among them.
Identification of students who may need help. In particular, the training that RAs, graduate assistants, professors, and student leaders have, and the criteria by which they intervene.
Outreach to special groups. This can be split into vulnerable populations at risk of dropping out, and those coming from a culture where mental illness is a taboo subject. This includes having diversity in personnel, as in America counseling often defaults to white women.
Handling of acute crises. Some students need to see someone more or less now. There needs to be slack in the system to deal with an irregular number of special cases.
Handling of chronic cases. Each new person with a chronic need aren’t filling up one slot, but several each term. This leads to:
Referral. At some point, a delay for someone with chronic need becomes excessive, and off-campus help is preferable. The system needs to provide a sufficient variety of options- not only diversity of practitioners but choice easily accessible by students without a car. This includes student health insurance being accepted at most practices, and referrals being timely.
Connections with disability accommodations. Under the Americans with Disabilities Act, people with chronic psychological conditions have special rights and can qualify for accommodations to make academics easier. However, the stigma of mental illness is distinct from the stigma of having a disability. Thus additional outreach must be made. The counseling office and disability office need to be well-connected.
Faculty education. In particular, making sure that accommodations students receive for a psychological issue are respected. Professors may resist making changes to their routine, such as letting students take a test at a different time. This needs to be restated as a civil rights issue.
and
Letting peers tell their own stories. Having experience with a speaker’s bureau, I can attest to the power of having people with mental health issues open up. Having the ability to educate is empowering. People dealing with mental illness should be able to self-liberate.
Mental illness as a topic is something society just has no idea how to handle. I’ve written about how mental illness is misused to score political points (usually by creating the illusion that a mental disorder is a prerequisite for horrendous crimes). Thankfully I stumbled across a compact guide, written by Margarita Tartakovsky, that tackles myths about mental illness and treatment. If you need to educate in a hurray, highly recommended.
The best section deals with the fact that children’s content is stigmatizing in a way that we don’t often consider. It’s not just murder-mystery hour-long dramas on CBS, the process of misrepresentation begins early:
Adult programs aren’t the only ones that portray mental illness negatively and inaccurately. “Children’s programs have a surprising amount of stigmatizing content,” Olson said. For instance, Gaston in Beauty and the Beast attempts to prove that Belle’s father is crazy and should be locked up, she said.
When Wahl and colleagues examined the content of children’s TV programs (Wahl, Hanrahan, Karl, Lasher & Swaye, 2007), they found that many used slang or disparaging language (e.g., “crazy,” “nuts,” “mad”). Characters with mental illness were typically depicted “as aggressive and threatening” and other characters feared, disrespected or avoided them. His earlier research also showed that children view mental illness as less desirable than other health conditions (Wahl, 2002).
As I’ve said before on this website, I am a member of Stamp Out Stigma. It’s a speakers’ bureau dedicated to putting a human face on mental illness, and countering negative stereotypes that stigmatize those who deal with their disease.
Today we spoke at a training for a crisis line. The work that these organizations do is incredible; even though I have bipolar disorder, dealing with the pain of others in my community can be overwhelming. Just because I can understand doesn’t mean I can handle other people’s desperation. I am glad there is something I can help them with, because I can’t do what they do. It would be a serious threat to my present stability.
What our conversation eventually led to is how those in crisis can feel trapped when looking for help. What is important to know is that overcoming the fear of stigma and seeking professional help is only the first step in treatment. There is the fear of powerful, sometimes dangerous medication. Therapy is now commonplace, but it can still be a point of alienation. And when you ‘come out’ to family or friends about what you go through, you have to educate each one – because what mental illness is and is not are just not taught or discussed about.
So when someone calls a crisis line, it may not come from a lack of resources. Yes, a person may not know where or how to get help, but they may also fear the help they get. Unmedicated you can end up in crisis, but also after months or years of trying treatment and finding it only partially effective.
A friend of mine was diagnosed as bipolar not that long ago. She was older than me, so she got the news 12 years later in life than I did. She, like me, feared the side-effects and power of the medication. Ultimately it took a crisis to remove that psychological barrier and embrace treatment.
In the end, it’s a series of difficult choices. Mental illness evolves, and people are at different points in the process of understanding, denial, anger, and acceptance. Crisis can be necessary for transition, but not everyone lives through a crisis. That’s why crisis lines and trained staff is so important. The way forward is blocked by a sense of desperation and isolation, both physical and psychological.
Mental illness is a maze, but sometimes you need to bust through some walls to get out. My crisis in 2012 led to me hitting a brick wall – a massive increase in antipsychotic dosage that slowed me down to a crawl. But with that collision the chaos stopped, and a new, better life could be put together from the pieces.
Sometimes you gotta hit a wall. And there need to be people to make sure you get out safe on the other side.
In a perfect follow-up to my earlier post on mental illness and stigma, Al Jazeera America has posted a lovely feature about Elyn Saks, a distinguished legal scholar who “came out” as schizophrenic in 2007.
I think her story helps demonstrate a parallel between combating stigma about mental illness and combating stigma about being LGBT. Friday’s celebrity news was dominated by Ellen Page coming out as lesbian. The more people that are open and public about their sexuality, the easier it becomes for those who are still tentative about coming out. Saks, by deciding to emerge as a genius academic living with a serious mental condition, sends a clear message. Having bipolar disorder, or schizophrenia, or major depression isn’t a personal failing, and it doesn’t guarantee a life of missed opportunity. There is power in her story, where she went ahead with her dreams despite pleas to choose a less ambitious career.
There are many traits that can isolate us- being LGBT, having a religious or political philosophy at odds with our family or community, and yes, living with mental illness. The reason I choose to live openly as a bipolar is that I’ve come to learn that I am not alone. There are other people like me, hundreds of thousands in the United States. When Saks and those like her talk about their experience in public, it helps to show that the struggle you are having is not unique.
And that it’s not something to ever be ashamed of.
I’ve been featured twice recently in articles about the Affordable Care Act and its impact on mental healthcare- first by the Peninsula Press, and subsequently by Generation Progress, which is an offshoot of the Center for American Progress think tank. This wasn’t by accident- I approached the author of the first article, Maya Horowitz, during a county meeting on mental health. What prompted me is the serious lack of literacy in regards to what people with mental disorders are like and the challenges they face. The ACA is a good legislative step by eliminating these disorders from disqualifying individuals from quality insurance, nevertheless there still is societal stigma.
A place I return to time and time again is the largest bipolar community on reddit.com. To some extent, in a non-medical sense I’m already somewhat of an expert. Living with bipolar disorder for almost nine years now, I see my own early struggles in new people that show up. In the pre-ACA era there was what I described to the Peninsula Press as “a climate of fear.” Consequently most people stayed in the closet, and avoided disclosing their status to co-workers. It was dangerous to let insurance companies know too much about your chronic condition, and embarrassing to disclose in a social setting.
Polls show that a third of Americans think prayer alone can overcome serious mental illness. People who openly talk about their struggles will inevitably get condescending suggestions to ditch their medication in favor of alternative remedies, yoga, or positive thinking. Many can improve their mood with exercise, sunlight, and improved diet; but scientifically it is clear that medication is the primary answer for people with severe major depression:
The magnitude of benefit of antidepressant medication compared with placebo increases with severity of depression symptoms, and may be minimal or nonexistent, on average, in patients with mild or moderate symptoms. For patients with very severe depression, the benefit of medications over placebo is substantial. (2010 study, source)
The public by and large does not understand major depression, or bipolar disorder, or schizophrenia are, how they present, are diagnosed, and are treated. This lack of tangible knowledge leads to one of the most offensive aspects of mental health in America.
That the media and special interest groups are lumping all violent behavior with mental illness, and erasing any distinction between violent individuals, those with mental disorders, and violent individuals with mental disorders.
A large portion of mass shootings lead to a blame game, and mental illness is always brought up as a hand-wave answer for why such things happen. This is reinforced by scary news features, along with TV and film portrayals of sadistic, insane villains. However, the link to violence is an illusion. Terrible crimes are committed routinely by people with no trace of mental illness; the more blame lumped onto mental health, the less vigilant people are about other at-risk groups.
Indeed several mass shooters had serious mental issues, but they also had warning signs that should have been picked up on. More stigmatization keeps people from seeking treatment, and leading to risky and destructive behavior.
The reason I volunteered to go on the record is because there need to be more voices with experience, even though it’s always awkward to talk about mental illness in public. Anti-stigma campaigns are being formulated and launched- my county now has a unified campaign with quality materials. One way I look at the 21st century is how there are a shrinking number of acceptance prejudices. In many ways those with mental health are not treated with the same empathy and respect as others. They should.
Unspoken Politics 