Provide Students with Mental Illness the Medical Care They Paid For

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MIT's Stata Center (Source: Wikimedia Commons)

I sat down to breakfast with my cereal, orange juice, and bottle of pills. Around me were several undergraduates at the Massachusetts Institute of Technology (MIT), who lived with me at the cooperative house where I served as Resident Advisor from 2012 to 2014. When the conversation turned to my pills, I explained, as naturally as could be, that I was taking lithium carbonate to treat my mental-health diagnosis of Bipolar Disorder, Type II.

As the students’ eyes widened, perhaps wondering about the fitness of their new RA for the job, I explained that mood disorders based in brain chemistry are extremely common, that treatment is easy, that I’ve never felt better since beginning treatment. With a confidence rooted in life experience, I said to the students that I am a high-functioning person who gets a lot done, who accomplished a lot as a student at MIT years ago, and who has continued that pattern through a leadership career in political technology and now into studying for the rabbinate. I am managing a mental health condition. Thus, in a scene often repeated during my tenure, I encouraged the students to seek mental health screening if they should ever find themselves experiencing intense mood swings, periods of lethargy, or other potential warning signs from my life and from commonly available literature. I assured them that for those of us who experience these very common disorders, life gets a lot better with treatment.

Unfortunately, MIT has a lot of work to do ensuring a nondiscriminatory environment free of stigma and threat for students suffering from mental illness. During my two years as Resident Advisor, by far the most common question I received about mental health care was: “How can I seek mental health treatment without MIT finding out about it?” Each of the dozens, probably hundreds of times this conversation took place over my 26 months on the job, it was my understanding that there is a widespread, deep fear among MIT undergraduate students that if they seek mental health care, their statements might be used against them to stigmatize them, to disadvantage them, and/or to remove them from school against their will.

Never mind, for the moment, whether these fears are well founded or not. I don’t intend to be the party accusing MIT of doing anything in particular involving any specific case, for two reasons. First, I am as intimidated as the students of a self-defending bureaucracy – although I did send this article to high-level staff before publishing it, and I have e-mail records of their positive, if noncommittal, response. Second, this problem is hardly unique to MIT, and the purpose of this article is to bring the issue of student mental health into open discussion, not to make specific allegations of discrimination, medical malpractice, or other misconduct.

But it is plain to every observer that MIT has permitted a climate of fear to fester around mental health. I worry that students are going through MIT not getting the mental health care that they need, have paid for, and are entitled to as reasonable accommodation for their disability, because MIT has failed to redress a climate of festering fear among them that their therapeutic conversations will be used against them to kick them out of the Institute. I attended a better MIT from 1995 to 1999, and today’s students deserve the same chance.

To state the problem without making an allegation, let me say very carefully that stories circulate among students about people who have gone through the horrific experience of being handed “voluntary” separation forms to sign as an MIT-imposed condition of release from the mental hospital, of readmission criteria and timelines altered by the unilateral fiat of the administration, of being accused of lying after self-representing that they were not suicidal, of having their medical diagnoses inflated to bolster institutional justification for a required or coerced withdrawal, and even a story of someone being given 45 minutes to pack their belongings and abandoned by MIT personnel on the street corner.

There may come a time and place for me to say what if anything I was an eyewitness to, but that is not here and not now. It suffices to remark that I was appalled at the sheer number of these stories – dozens of separate stories – that I heard from students as a Resident Advisor of a small, out-of-the-way off-campus house. I make no allegation here. I am pleased that the MIT Chancellor’s Office seems to be investigating this issue; I hope they are able to able to set a model for other schools by implementing the recommendations I make below.

As to the possible mechanism of students being unnecessarily removed from the Institute, it was explained to me by personnel from the National Alliance on Mental Illness (NAMI) and the Judge David L. Bazelon Center for Mental Health Law in Washington, D.C., that the usually very strict Health Insurance Portability and Accountability Act (HIPAA) has a loophole, passed after the shootings at Virginia Tech in 2007, that allows mental-health information to be shared with a university in order to ensure the safety of the community. This overly broad exemption, according to these agencies, makes it perfectly legal for otherwise confidential mental-health information, including statements made by students in psychotherapy, to be shared against the student’s will with administrative authorities having the power to force the student to withdraw from school.

To my mind, if such a process really exists, it would raise serious questions about the fiduciary ethics of medical practitioners sharing the information. Such practitioners would appear to be in a conflict of interest between their duty to their patient’s best interest, and the self-perceived legal interest of their institutional employer. I don’t know whether or to what extent such information sharing happens within today’s MIT or other schools, but schools may wish to examine their processes to ask these legal and ethical questions. MIT, for example, may wish to determine whether MIT Medical personnel have ever sat with Student Support Services and/or with the faculty Committee on Academic Performance to discuss individual cases, and if so what their role is, by which professional ethics frameworks they might personally be bound, which professional associations oversee those frameworks, whether students have a right to obtain any information shared, and the circumstances of that information having been shared, if it was.

MIT's Lobby (Source: Wikimedia Commons)

It was just before Thanksgiving, 1996. I was 19 years old. I was having a difficult time choosing my major in the fall term of my sophomore year, the pressure of MIT was getting to me, and I was struggling with my sexuality as a closeted gay man. The unarticulated pressures boiled in my head. Looking back, I now see that this was my first major experience with a depressive episode. I did not get treatment; instead, I made a snap decision one day, while riding my bicycle indoors toward my room at the end of a long hallway in my dormitory, not to stop as I intentionally slammed into the wall.

Thank goodness I was not hurt. But I do not think I would have been allowed to graduate from MIT if I had been a student today and had done the same thing. Thank goodness, too, that I received help, rather than being summarily banned from the dormitories as punishment for damaging MIT property, or being given over to a hostile mental-health interrogation with the goal of finding a reason to label me a dangerous person so that I could be expelled under the pretext of medical unfitness. In their kindness, my house manager and faculty heads of house said to me that their concern was for my well-being. The always irascible building engineer fixed the huge hole I had made in the wall without even complaining very much. People across MIT checked in on me and helped me through what had become a difficult time. I went home to my family for Thanksgiving and came back refreshed.

And far from being a liability to MIT, I went on to serve on the Presidential Task Force on Student Life and Learning, to earn the Karl Taylor Compton Prize for outstanding service to the MIT community, to have an annual award named in my honor by the student government, to a successful career in political technology and now to training to become a rabbi including Harvard Divinity School’s prestigious Ministry Fellowship, Harry Austryn Wolfson Fellowship in Jewish Studies, and Frederick Sheldon Traveling Fellowship, which paid for my year of research in Israel last year. I also went on to a Bipolar II diagnosis and to the immense improvement to my quality of life that has been provided by treatment.

This disease always has its ups and downs, but for many of us it is just a minor life annoyance once treated. Our goal should be to get young adults who need treatment into treatment, not to scare them away, nor indeed to kick them out of school and saddle them with debt instead of opportunity. It is very frightening for me to reflect on where I’d be at this point in my life if I had been a student under the current MIT regime. I believe I’d have had the rug of opportunity pulled out from under me after my bicycle incident, and I shudder to think where I might be now.

It was difficult for me to seek treatment in 1996. I was unaware, or perhaps had not accepted, that I was suffering mood swings, and existing cultural attitudes toward my sexual identity were an ongoing source of distress for me. But it is far more difficult for today’s students to seek treatment than it was for me. What ground we have gained in depathologizing sexual minorities, we have lost many times over in that HIPAA exception that causes such fear. At least I knew in 1996 I could talk to a psychiatrist without it impacting my academic placement; in fact, I knew that I could speak freely as a paying customer of a health care service with an unadulterated ethical and legal responsibility to do no harm to me, and not to act in any perception of MIT’s interest should it conflict with mine.

If MIT Medical wishes to assure students that it acts only in their interest, it must take responsibility for maintaining confidence that students’ therapeutic statements will not be used against their interests, to make a case against them in a lightning-fast adversarial proceeding governing their academic placement, at which they are not afforded adequate representation or time to make a defense. I take no position in this article on the question of whether anything like that has happened recently at MIT. But many students think it has, and that is a problem.

MIT needs transparency and clarity on exactly what patient data is shared, when, and with whom, spelled out in plain English and not in legalese. It needs publicly available written policies whose enforcement students can count on, governing all psychiatric information sharing and all subsequent decisions about a student’s ability to remain at MIT. It needs a slower involuntary-separation process (if, indeed, one now exists) that gives students a reasonable amount of time to represent themselves adequately or to obtain proper representation.

If in fact there is currently unlawful coercion in obtaining student signatures on documents, for example by delaying their hospital release dates without medical justification, that must end so that MIT can accurately assess which separations are voluntary and which are not. (Anyone wishing to assess whether such things happen at MIT or at any other school might compare the dates of voluntary- or involuntary-separation forms with dates of release from the mental hospital.)

MIT needs an executive-level policy that conditions of readmission mutually agreed to by MIT and a student taking separation or leave will stand as agreed, and will not be unilaterally altered by MIT. At MIT, I believe it would be a confidence-building move to place readmission under the Admissions Office instead of Student Support Services, the agency that handles forced withdrawals; the Admissions staff admitted the student in the first place and are highly trained in the practice of evaluating admissions cases in a consistent, lawful, and nondiscriminatory way.

Most of all, if indeed MIT Medical has for perceived legal, safety, or any other reasons given up its exclusive fiduciary role on behalf of its student patients, and if indeed it feels at times the need to act in MIT’s perceived legal self-interest over and against the interest of the paying consumer of health services, then MIT must disclose that. In that case, MIT would need an office specifically charged to work enthusiastically in and only in the student’s fiduciary interest, policed at the highest level so that students can have confidence their interests are being represented in more than a pro forma way. Safeguards are necessary to system integrity and legal compliance. MIT’s successful restructuring of its mental-health leave policies could become a model for other schools.

I owe an apology to MIT President Rafael Reif. In November 2012, shortly after he assumed the presidency of MIT and after I started as Resident Advisor, I took him up on his kind offer to meet with any MIT community member who wished to speak with him. It was a welcome return to the MIT I remembered from the 1990s: a place where open-door policies and a suspicion of formalistic structures ensured a healthy ferment of ideas, in which an undergraduate could invent the next great device because the right professor or licensing administrator had her door open.

I found President Reif to be an open ear, willing to hear anything. I told him that I found the MIT of 2012 a meaner place than the school I attended. I told him that I had an issue to bring up – it was this issue – and after explaining it in brief summary, President Reif asked me to follow up with more detail. However, despite the President’s personal openness, and despite every confidence I felt that it would not be his intention to see anyone punished for speaking up, I ultimately did not feel comfortable as an employee making this kind of challenge. The room and board I received in compensation for my services as RA made it possible for me to devote my attention to my graduate studies; I had very little financial cushion and felt intimidated to risk administrative retaliation far below the President’s level. I would never have had that fear at MIT in the 1990s, but I had it in 2012.

I therefore delayed my report on this issue, from that day in President Reif’s office until today. I am not proud of the delay. I could have said most of this earlier, and perhaps students who suffered in the meanwhile could have been helped.

Instead, I tried the best I could to get my students and any students who came to me out of trouble, using some of the tricks of the trade I’d developed with student-government colleagues back in the 1990s, some of which still worked and some of which did not. As long as I am now making public my concerns around students’ fears about mental-health care at MIT, I would like also to make public my apology to President Reif for not answering his question sooner, or in the forum he had taken it upon himself to put together.

The following resources may be useful to students at MIT and elsewhere, in case they feel their school has not fully respected their rights due to their mental-health condition.

  • The National Alliance for the Mentally Ill (NAMI) is a high-profile advocacy organization with chapters in localities nationwide, including in the Boston area. NAMI provides resources, advice, referrals, and assistance with advocacy in cases ranging from simple curiosity to referrals for healthcare to situations requiring advocacy. Students may contact NAMI at (800) 950-6264 or NAMI Massachusetts at (617) 580-8541.

  • The Mental Health Legal Advisors Committee (MHLAC), based in Boston, provides legal advice and referral to individuals with a potential legal issue related to mental health. MHLAC’s website states that it “provide[s] informal advocacy or full legal representation to indigent adults and children who . . . are suspended or expelled from school.” All callers receive “basic advice and referral information.” I strongly advise all students who have any concern about their school’s safeguarding of their legal rights related to mental health to contact MHLAC at (617) 338-2345 in the Boston area, or toll-free at (800) 342-9092. Select option 4.

  • The HIPAA exception for student mental health is a bad law. As documented by the Yale Daily News, the law and its operation legalize information sharing which could lead to discrimination against students suffering from mental illness who pose no credible threat to anyone else’s safety. As for students who do find themselves at risk for self-harm due to their illness, they are entitled to medical care provided exclusively in their fiduciary interest from the institution they pay to provide them medical care. People wishing to advocate for legislative change should contact NAMI above, and their Representatives and Senators in Congress (click here to find their contact information).

  • The City of Cambridge, Mass., offers strong anti-discrimination and disability protections enforced by local ordinance and municipal government. Anyone who feels they have suffered discrimination due to any medical condition or diagnosis, particularly if they wish to claim wrongful termination of housing and/or employment in the City of Cambridge, may wish to contact the Cambridge Human Rights Commission at (617) 349-4396. Students outside Cambridge may wish to contact their city’s Human Rights Commission and/or their local municipal housing regulatory agency to determine if they have due-process rights which must be followed before they can be terminated from previously contracted housing or employment. It may be fruitful for legal professionals to test whether contracts attempting to abridge such rights are legally enforceable within Cambridge or within other jurisdictions.

  • The Justice Bazelon Center for Mental Health Law is a Washington, D.C., policy organization that has been studying the issue of mental-health discrimination at American universities. Personnel at the Bazelon Center were helpful to me in gathering information for this article. The Bazelon Center offers resources advising students of their rights under nondiscrimination law, as well as case summaries that illustrate the problem as well as the possibilities for obtaining justice. The Bazelon Center would undoubtedly be happy to hear from students who wish to register their story for evaluation and advice, and in case it is useful to the Center’s efforts to change U.S. law to eliminate the HIPAA loophole discussed above. Interested attorneys, political staff, public officials and individuals able to work for change at a higher level would also surely be helpful to the Bazelon Center’s efforts. The Bazelon Center can be contacted at (202) 467-5730.

  • I am sure there are several excellent attorneys who can help a student, but I have had conversations with personal-injury attorney Tim Sindelar, who practices in Newton, Mass. He informs me that it may be unlawful in Massachusetts to attach academic readmission criteria to a medical leave. Students have told me that it is standard policy at MIT to require students on mental-health leave to maintain a B average in a full academic courseload while away. Mr. Sindelar says that he would like to speak with students in such cases. Personally, I have trouble believing that MIT may be systematically engaging in unlawful conduct; a screw-up of that magnitude of potential liability strains my credulity. If there are students with written documentation that they have been placed on medical leave with academic conditions for readmission, they may wish to contact Mr. Sindelar for possible representation at law: (617) 431-1201. Students outside Massachusetts may wish to contact NAMI or the Bazelon Center for possible referral to attorneys experienced in this area. In jurisdictions lacking such a law, advocates may wish to speak with their state representatives about passing one.

  • Federal law may permit the sharing of students’ confidential data with non-medical university authorities, but it seems to me that medical professional ethics still govern the way and manner such information is shared, and under what circumstances. In particular, I imagine doctors are still required to do no harm (the Hippocratic oath) and to act in the interest of their patient. If a mental health practitioner is found to have acted over against their patient’s interest, in particular if they have misrepresented or overblown their patient’s diagnosis due to their perception of their employer’s corporate or legal interest, or if they have pretextually justified their actions as to their patient’s interest when in fact they acted in their employer’s interest, that practitioner may have violated professional standards and could be subject to ethics and licensure review. Students who wish to make a complaint about the professional ethics of a psychiatric doctor may contact the American Psychiatric Association at 1-888-35-PSYCH (-77924) as well as the Massachusetts Board of Registration in Medicine at (617) 654-9800. For psychologists and social workers (who do not carry an M.D. degree), the Commonwealth of Massachusetts offers a complaint form for download. Complainants outside Massachusetts will find similar avenues to file complaints.

Finally, there is no good answer to that omnipresent question, “How can I obtain mental-health care without my school finding out about it?” But there is good news, of which I hope this article will play a small part. I did significant research into this matter. Students should be advised, first, to seek care if they need it. Students have a right to this care, and they have a right not to be discriminated against for seeking or obtaining it, and I hope this article becomes a small part of an effort to lift the cloud of fear around seeking care. Students should be advised that off-campus hospitals will communicate with their school, so there is nothing gained from going that route.

Students, please, seek care first. You have rights and the many organizations listed above will help you defend them if necessary. It’s also true that many students have good experiences with MIT Mental Health & Counseling; I don’t doubt that’s true at every school. Just please seek care first.

For students who absolutely will not utilize their school’s mental-health services, there are limited confidential resources available for crisis counseling. I have sat with students as they called The Samaritans (617-536-2460), a totally confidential suicide-prevention hotline, and I have also referred students to the Boston Area Rape Crisis Center (BARCC) (617-492-8306) in cases where sexual assault may have been part of the issue. Outside the Boston area, can help with sexual-assault victim advocacy referrals. I have utilized The Samaritans myself for emotional support as a provider of support to students for whom suicidality was a potential issue, and I wholeheartedly recommend this service to other staff, especially live-in residential staff who care for students, when the caregiving responsibility gets heavy and they might not want to express all of their feelings to job supervisors. The friends of students at risk can also use the service.

It is encouraging that MIT students have engineered a software solution to fully anonymous peer-to-peer crisis support. The Lean on Me program, just rolled out last week, offers just such support, and I hope MIT continues to support it. Student support providers are trained by MIT personnel, and never access any identifying information so they cannot make a report if they wanted to. I must say that I’m displeased that the level of trust has deteriorated to a level that MIT students had to engineer a software solution to complete anonymity in order to feel comfortable coming forward with a mental-health concern. As paying customers of a health care product offered institutionally by MIT, they ought to be able to feel comfortable seeking care other than anonymously. But Lean on Me will fill a gap of need.

More importantly, these are only crisis intervention services. They can help in a difficult moment, but the most important goal is still to get anyone who is at risk into mental-health evaluation and treatment.

I know that it is hard to go to treatment, and I know the climate of fear among students doesn’t help. So let me end with an impassioned plea to students who may be suffering: please seek out and obtain mental-health evaluation and treatment. I know all about the horror stories and the perceived dangers, but I also know that students have rights as health-care consumers, and I know that the many organizations listed above are here to help you should you need their assistance.

Please go to see a mental-health practitioner if you need to begin the process of getting better. You’re surrounded by people who care about you, people who are not perpetrators of discrimination, people I trust to get to the bottom of the concerns I’ve raised in this article, people who want to see you get better. Some of us have an easier path than others, but I promise life is going to be a lot better on the other side of that first diagnosis. Let me therefore end, despite all the concerns, with the contact information for MIT Mental Health & Counseling: (617) 253-2916, or (617) 253-4481 on nights and weekends. Students at other schools, please utilize the equivalent provider at your school. Despite the issues and the fears, your mental health provider is still your most important resource.

Jeremy D. Sheris a rabbinical student expecting ordination April 3 on the Harvard Divinity School campus, where he is Ministry Fellow and Harry Austryn Wolfson Fellow in Jewish Studies. Former Director of Technology for the Washington State Democratic Party, former CEO of what is now Technology Services and a dual Israeli and American citizen, he practices voluntary simplicity and is an avid all-weather cyclist.