The community mental health movement and plan did not fail; It never had a chance. Reflecting upon Kansas City MO: It had a State of Missouri Department of Mental Health community mental health center with a structure based on the British catchment model. Five geographic areas were established, with each area served by a multi-disciplinary treatment team. Each team transitioned the patient & care from inpatient to outpatient. That is, inpatients upon discharge remained with the same staff which treated them on the inpatient unit and knew their history & care. Upon discharge that patient was not transferred to a stranger. What happened? Funding likely was not continued by the state for the long-haul and eventually the facility came to resemble warehousing.
At this time Missouri was emptying its long-term state hospital beds. Institutionalized people were sent to nursing homes because it was the only option.
Into the 1990s and beyond the psychiatric treatment facility population & the jail/prison populations began to switch domains: The mentally ill were jailed and the "successful-sociopathy subgroup" population sought psychiatric facilities, often seeking a psych diagnosis or disability. Complicated elements remain. None of this is simple or easy. This article speaks to NAMI and their solid methods of assistance.But It will take an integrated approach with many parties at the table.
This article gives me hope.
Thanks for all of the useful info in here. Curious to open an article that educates about the challenges faced by people who "are not necessarily prone to commit violent acts — they are far more likely to become victims of crime" by listing violent acts paired only with illnesses suffered by those who enacted them. Seems to perpetuate exactly the dominant narrative that is not only false but also harmful and largely cause for the very contrast that this article laid out (ie likelihood of folks with mental illness to be victims of violence). The message conveyed by the research would be more effectively communicated via stories of people with mental illness who have been victims of violent crime, or who have experienced recovery to health, or who experience their illnesses and coexist just fine with the world, or who have experienced the harm of social isolation caused by misperceptions enabled by media delivery such as the beginning of this article.
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The psychiatric advance directive comes from the Wellness Recovery Action Plan or WRAP, a comprehensive self-designed recovery approach. Also, Brody should have mentioned SAMHSA--the Substance Abuse & Mental Health Services Agency, a Federal agency which has lots of free trainings and information people with mental health challenges, their families and professionals who work in mental health treatment use to strengthen recovery efforts. SAMHSA supports the Recovery Model and publishesthe Eight Dimensions of Wellness and other wonderful resources. In England they are way ahead of the US in providing actual psychotherapy to people with severe and persistent mental illness--we used to do this in the US before the pharmaceutical industry and the managed care health insurance industry made profits more important than human beings. Recent research done in England shows that people with schizophrenia, severe bipolar, etc. benefit from psychotherapy and experience reduced symptoms leading to reduced medication doses. This should not be surprising. We are not biological machines! We are human beings and our thoughts and feelings affect our brain chemistry and our mental health, not just the other way around! I'd like to see Brody publish a follow-up article about WRAP and also SAMHSA. Everybody needs to be aware of these wonderful, person-centered methods and free resources. I know about them because I've worked in mental health and substance abuse treatment settings for 30 years.
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@Christine, Thank you for you helpful comment. Europe is way ahead of us in nearly all medicine.There is a genetically transmitted disease which causes extreme loss of vitamin B6 and zinc. It is called Kryptopyrolle disease and causes bipolar symptoms as well as metabolic issues.
This condition is recognized in Europe but inexplicably , not here.
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@A Nash thank you so much for sharing this info. I've taken note. Yes, there are many medical disorders that show psych symptoms and we are so behind here in North America.
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Could we extend the courteous of using people-first language to those who suffer from mental illness, the same way we do for those with any other disability or disease? I cringed reading the first paragraph of what was an otherwise good, important article. Just because someone committed a crime doesn’t mean they deserve to be identified by their disease first and their personhood second.
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@Melissa Lake Do you also have a problem identifying someone by religion, nationality, occupation or education? For example, “The Accountant prepared our taxes” or “the nurse set up the IV.” No, I didn’t think so. Mental illnesses become the person, and it is foolish to demand politically correct terms.
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@Susan Shapiro
1. Those comparisons are not equivalent
2. Part of the point in using person-first identification is that the individual is more than their label. This has nothing to do with being politically correct, but with treating people with respect.
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@Melissa Lake There is a push within disability communities to abandon person-first language and euphemisms (ie differently-abled). This language disregards personal identity. We don’t say, “a person with woman-ness” or “a person with gayness”, etc. The Deaf community insists on identity-first language. The Autistic community isn’t far behind.
I’m bipolar. I’m not a person with bipolar. Bipolar is an intrinsic part of who I am. It’s part of my identity and has been since before I was born.
Hi from St Lucia a small(238sq mile) island in the Caribbean In 1977 we developed a community mental health program and kept most of our clients out of hospital Out pt clinics,home visits and support to family ,primary caregivers and police were de riguerThe families knew they could always ring(access) helpIt was a “ modern” concept at the time Unfortunately mental health programs are generally given low priority and that program has all but collapsed Thing is I can’t think of anything betterAs a now retired mental health nurse I can certainly attest to the effectiveness of that approach in terms of cost and all other benefits .My biggest hope and prayer is that the world will become more compassionate and caring re mental ill health
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Folks, the answer is better access to care. I live with bipolar disorder and am “mostly stable” due to medication and ongoing visits with a psychiatrist. (Along with a devout belief in Cognitive Behavioral Therapy, supportive family & daily exercise.) Guess what? The psychiatric clinic that treats me will no longer do so because I am “mostly stable.” They have to make room for someone that is in much worse shape. My heart breaks for that person but what about me? I have already began rationing my medication, cutting my pills in half so I will still have a bit of salvation to swallow while I search for another doctor. Without access to a doctor I will not be able to get medication. Without medication history has proven that I will become unstable. Why does it have to be so hard?
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What about a community health center I get subsidized medicine.
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I feel for you. They should have recommendations for you how to transition you to the next plan of care.
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The trope that "people with severe mental illness are more likely to be victims of violent crime than perpetrators," has become a politically correct statement of art, implying that these individuals are no more dangerous than unaffected people.
This is not true. People with bipolar disorder and schizophrenia are in fact more likely to be aggressive, and according to at least one study, more likely to commit homicide, than people without severe mental illnesses. This is especially true if they are not receiving treatment for their illness, are also using drugs, or have paranoid delusions.
It is also true they are more likely to be victims of violence themselves, but that does not change the fact that they are more likely to commit violent acts.
Well-meaning writers like Ms. Brody persist in advancing statements implying this is not the case. Since families of people with severe mental illness are at the highest risk for being harmed, statements which imply they are perfectly safe do them a grave disservice.
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@Mary May
The data just don’t bear out your assertions. Meta analyses show that people with schizophrenia are not more likely to be violent. Maybe if society continues to live in fear of those with mental illness, and dehumanizes the way you suggest, we will truly have a disaster on our hands.
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Can you supply statistics to back up that statement?
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@Mary May You’re only citing “studies” that cherry-pick their subjects: diagnosed individuals who *also battle substance addiction, poverty, and abusive domestic environments*. REAL research controls for those factors, instead of manipulating them to produce the “findings” that researchers want to see.
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Not all drugs have side effects. I have taken lithium for decades with no side effects except weight loss, a welcome surprise . My friend is taking 3 separate antidepressants concurrently and ha gainer 50 pounds in one year. She can’t get off them because of the withdrawal effects. The nausea went on for months and seemed to get worse not better with time.
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Sadly we simply do not have any kind of mental health system at all or rather what we call "treatment" is nothing more than what we do best in this country: imprison then punish that and that alone is what is really going on IF anyone dares to try to get help if they are below a certain income.
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I am all for more humane treatment in more inviting atmospheres, but for goodness sakes, I hope anyone and everyone ever "touched" by so-called 'mental illness' does copious amounts of research on their own, especially into alternatives like the recovery movement. Don't believe the hype - yes, get treatment, but realize that the atypical anti-psychotic referenced in this article can (can, not necessarily does) lead to debilitating EPS. Mental illness is such a broad term that it is almost useless.
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“Mental illness is such a broad term it’s almost useless.” Couldn’t agree more.
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@Jen Brandt I know from personal experience that atypical medications can be nothing less than a miracle, transformative, life-changing . . EPS is a side-effect in some people, but if you actually experience psychosis you might understand it is well worth the risk. Detering people from drugs that might allow those with serious mental illness to live normal lives by scaring them with the prospect of side effcects is a terrible idea. It is already hard enough to get those suffering with psychosis to accept any treatment. Many mental illnesses are legitimate medical conditions that can and are treated successfully every day. As I said, I know from personal experience.
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@BH I have schizoaffective disorder and am grateful for my drugs. Being psychotic isn't just an altered state, it is a complete loss of self. Not only can't I process any information or be creative but my relationships with the people I care for and even with my beloved pets become meaningless.
Anti-psychotics work for me. They do have unwanted side effects but not nearly as unwanted as the disintegration of my personality.
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One of the columbine shooters was taking the psychiatric drug Luvox, the article should have mentioned that that specific case goes against what the whole article tries to prove. By not pointing that out it seems as if if that kid got treatment than the tragedy would have been avoided, which is not the case at all. The article claims that "treatments known to be effective are wrongly dismissed as ineffective", but this very article creates the opposite problem, it gives the impression that a treatment known to have been ineffective would have been effective.
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Heartbreaking stuff. I lost my beloved son to some combination of bi-polar/schizoaffective disorder and autism in March at age 30. He took his own life. He was on a antipsychotic consistently for a year (monthly injectable) and was thinking clearly, however he was depressed and would not take medication to treat it. He said it was between him and his doctor- can’t argue with that- but he didn’t. He endured so many horrible side effects that he never trusted their efficacy. It was a major breakthrough to get him to take the injectable. Hospitalizations and residential treatment too. At the time of his passing He was working part time and attending university part time; huge accomplishments but at the same time feeling like a failure again as he failed his org chem midterm. I believe he was just done with a life of suffering- he could finally see clearly that his brain chemistry wouldn’t allow him to have the life he wanted and he didn’t see a way forward. Like us all he wanted independence and stability - meaning love, a meaningful job and purpose. But he couldn’t function to get out of bed to get to class on time. Lessons? Severe mental illness May or May not be treatable even with financial resources, and requires every ounce of strength from loved ones. I don’t really know if it would have mattered if he got treatment for his depression- l cannot judge- he was a kind and loving person- and I wish him peace.
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@Joan
Dear Joan,
You have my deepest sympathy. I pray for peace for you and your son.
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My deepest sympathy to you and your family. I’m 60, & my big sister has delt with this illness for 40 years.
It has been a roller coaster ride from the beginning, mostly mellower in the last 10 years. I’m very thankful for the medication advances, and assertive community outreach programs. Both have helped immensely.
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The main reason that prisons now house so many folks with mental illness is the decades long deinstitutionalization that closed most of the longterm facilities that once took care of much of this population, instead of leaving them to fend for themselves out on the streets. What was advanced as "freedom" was really an aggressive policy of cutting taxes going to the community safety net.
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@DRD how are today’s jails and prisons any different from state hospitals several decades ago? Neither institution provides job training or placement services and only exist to get “undesirables” out of society.
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@Susan Shapiro agree completely. Our facility allows inmates to refuse any medication they don't want, regardless of how psychotic they may be. The result is disastrous. There are not enough psych beds to take patients needing inpatient care and so they languish in isolation without care as their disorders worsen. This cannot be an improvement.
It would help if psychiatry as a discipline were merged into neurology. Treatment for neurological disorders such as Parkinson's (which by the way often includes psychoses in later stages) is covered by insurance, and research is funded. Treatment for disorders deemed psychiatric are poorly covered by insurance if at all. Why would young people interested in the brain train for psychiatry when they can train for neurology and receive much better funding? Alzheimers gets funded while schizophrenia does not. Disorders of the brain should be put under one umbrella.
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@Awonder The problem with that is the specialty of neurology is already so overburdened with different ailments and diseases that it, itself, needs to be split into at least two separate specialties.
Movement disorders are so huge an issue they need their own neurology specialty; it's no longer enough to make Parkinson's, for instance, a subspecialty of neurology; I've never met a neurologist -- and I've met more than my share -- who had a full grasp of the symptoms, ailments, issues and necessary treatments for Parkinson's Disease and the larger community of sufferers of Parkinsonism. What's to be gained by overburdening them even more?
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@Awonder amen to this. It’s interesting to watch how many physicians react to a patient having a symptom (like psychosis) if it is due to Parkinson’s versus something like schizophrenia. When really, our knowledge of the brain is so limited, why are we judging diseases like bipolar disorder, etc. so harshly in society?
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@Auntie Mame The fact is we should stop being so specialized. We uncover instances of medicine for one disease relieving the symptoms of others all the time. When the goal of American medicine is relieving suffering, not profit from narrowly specialized treatments, then more suffering will be relieved. this is not saying that the causes shouldn’t be identified, but walling off brain research isn’t helpful.
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I'm disappointed and even angered at the false information provided in this article. NYTimes needs to do better than this.
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@T SB Totally agree. It reads like a college paper on what someone thinks mental illness. To incorporate the school shooters as examples is just tacky and further highlights the discrimination those with mental illness face every day.
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If you or someone you know has questions or need help because of a mental illness, please contact the NAMI HelpLine at 800-950-6264. They have helped me and so many others with information, resources and understanding.
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Just be aware that most of NAMI‘s funding comes from the pharmaceutical industry.
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I am a retired mental health and addictions counselor and program developer/manager. Ms. Brody is right; many either believe they are not ill or refuse treatment because they are afraid. In addition, some medications make people feel physically ill and/or create other health problems, such as huge weight gain.
Then there is the stigma that persists. At their root, mental illnesses are physical illnesses of the brain, just as diabetes is an illness of the pancreas. People will be more willing to seek treatment when they are not stigmatized for doing so. As Ms. Brody said, most people with mental illness are far more likely to be victims than perpetrators.
We don't know why some people get mental illness, why for some it is far worse than for others and which medications and other treatments will work best for which people. It's pretty much trial-and-error until we find something that works. In addition, there are those who respond for a while to a medication but for whom the medication stops working after months or years, requiring the trial of a different medication.
The promise that when mental hospitals were closed, community treatment would be available has not come to fruition. We need to make sure it does. Most people can live at home and get good treatment, if only that treatment is available.
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We don’t know what causes mental illness because the powers that control research don’t seem to be interested in understanding it.
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@Barbara
“Then there is the stigma that persists. At their root, mental illnesses are physical illnesses of the brain, just as diabetes is an illness of the pancreas. People will be more willing to seek treatment when they are not stigmatized for doing so.”
The “mental illness is a brain disease” actually is proven to increase the stigma of mental illness.
Also your claim that mental illnesses are physical illnesses in the brain is an unproven theory. See the recent book “mind fixers: psychiatry’s trouble search for the biology of mental illness.” Currently there are no known biomarkers for mental illnesses, only some hypotheses.
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That’s not true . Watch sopolsky explain depression. He is a neurobiologist. https://youtu.be/NOAgplgTxfc
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As with many illnesses, mental illness will never be understood or cured until the actual aim of research is to understand and cured. The end purpose of contemporary research is to create wealth. The pharmaceutical industry hs dominated standard treatment for decades offering frankly unacceptable and even dangerous treatments .
The profit motive has ushered in a new dark age in medicine. A buyer beware age.
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I certainly hope that there will be more effective and kinder treatments in the future, but we are not there now. I had a patient go to the emergency room three times in a week before she was finally admitted, for over a month, for treatment of a mental disorder. This was so avoidable but repeated requests and alarms went unheeded. There is a lot of rhetoric about funding more mental health treatment, but where is it? What is done for the suffering of individuals and families? How do other countries handle this--I am sure some much better than us/US.
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@Mary Yes, Europe is more comprehensive in many places. Where there’s a need for high levels of profit you really can’t have comprehensive care.
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For those of u who, like me, clicked on the link to this article hoping to find information, resources, perhaps some guidance, new ideas, or an empathetic tone...and instead found misinformation and the perpetuation of false and dangerous stereotypes...we, the "severe and persistent," have more strength than we give ourselves credit for. Folks can be well-meaning, but ignorance abounds. They aren't stupid or malicious, they just don't understand. Be kind to yourself. Keep searching, keep reading, find simple joys and relish them.
But truly I'm sad and angry...everything I'm saying to you, I'm saying to myself. I am so disappointed that this was what I found because I think this issue should be explored more, when mental illness is severe and debilitating...how better to help the patients, their families and support network, develop community resources...it's unfortunate that such an opportunity was missed here.
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From this piece, one would think severe mental illness is all about psychosis. As far as I know, severe depression, anxiety and PTSD are a lot more pervasive--and few of those folks are in danger of killing anyone.
The trope that there are all sorts of treatments available is a laugh. There is very little promise, no cures, and practitioners never admit that, because they can no longer line their pockets with their stab-in-the-dark treatments if they do.
We're experiencing a mental health crisis in this country. Research on treatment with psychedelics at Johns Hopkins and MAPS, which shows promise in getting to the root of trauma underlying mental illness, should be massively funded and this new class of drugs--psylocibin, LSD and the like--should be made legal for medical use now, not later. Ketamine, too, should be widely available--a generic that is too cheap for Big Pharma to push, but which has shown clear success in stopping depression in its tracks for more than 70% of those who haven't responded to SSRIs.
I'm left wondering how the Times can ever write an article on this topic without at least a mention of the latest breakthrough treatments. The paper should avoid publishing lightweight articles about such serious issues.
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@Irene Brophy We have a crisis not because there is not effective treatment, but because that treatment is not available in many areas. While psychosis is the most serious mental illness, it can be found not only in schizophrenia and bipolar disorder but also in severe depression, PTSD and anxiety disorders. Yale University School of Medicine, psychiatry department has done extensive studies with ketamine. It can be used with certain people, but doctors must be available who know how to use it. I live in a "mental health desert," as my counselor friends call it. This is the real tragedy.
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@Irene Brophy The article mentioned that the mentally ill are more in danger of being victims, but spent a lot of time describing worst case scenarios with horrendous violence. I just want to point out that "psychosis" does not mean people killing others, although it can be present in such extreme times. Psychosis means a person is divorced from his/her/their current reality. For instance, he/she/they might have delusions or hallucinations, or just be dissociated. A person can have psychosis without being violent.
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@Elisa Waggoner no kidding. I thought this was very odd and did not understand how the article advanced forward thinking toward these diseases.
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I just read this article again because I felt I had somehow missed the point of it. On second reading, it seemed to me that the point was to introduce Dr. Rosenberg's book about the mental health system...an inference that renders the article's headline and sub-heading even more perplexing.
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This is the first time I’ve ever read anything stating that Eric Harris and Dylan Klebold were mentally ill and the author presents zero evidence supporting this claim.
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@Laura agree 100% This author is looking through a completely false lens.
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@Laura
I agree, the author should not have included Columbine in her review.
To be fair, some have concluded from a review of the known facts that Eric Harris suffered from a diagnosable personality disorder, although this is not uncontested. Whether personality disorders qualify as mental illness is also debatable.
I think the author should not have included Sandy Hook either, for similar reasons as Columbine.
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@rhino Actually, Adam Lanza was identified as suffering from mental illness as early as age 3, but he never received treatment. Sadly, the Yale Child Study Team examined Lanza at age 14 and wrote that he faced "a deteriorating life of dysfunction and isolation" without treatment.
Dr. Rosenberg states that mental illness is highly treatable. 19 years sober, 40 plus medications, ETC, 45 Transcranial Magnetic Stimulation treatments and one corrupt Esketamine trial latter. Top doctors all paid out of pocket despite health insurance and mental health parity and his comment stings like a slap to my face. Stop blaming the person, I have sought and complied with all treatments and I am just another sick person.
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@Henrietta Stone Henrietta, your story sounds so close to mine in many ways...I also had ECT, high dose polypharmacy for decades, TMS. Every single time, when my depression did not remit, I was blamed in full. In 35 years of treatment, the severe trauma I experienced as a child was never addressed. I finally gave up. I'm sorry it also happened to you. I say we are not to blame for seeking help and putting our trust in doctors. I wish you peace and healing.
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Please try DBT also. Dialectical behavioral therapy . It is finally helping. Not a cure all but it’s good training. I have no idea why I didn’t have this the last 35 years, forty mediations later .
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I do think the need for early treatment is a good point. My guess is that for a lot of people who are refusing treatment, if they had been offered treatment earlier, things would have gone a lot better.
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@Charlotte I think you're right, Charlotte. In the early 1980s, my first suicide attempt, which required having my stomach pumped, was dismissed as "looking for attention". Yes, the ER doctors saved my life, but they treated me terribly and sent me home without anyone speaking with me...no psych evaluation, no conversation at all. The Drs took my mother at her word when she told them, "My daughter is not depressed and there are no problems in the family.". Even though I'd overdosed on Elavil, an antidepressant that I was prescribed by a psychiatrist that the Board if Education found and paid for so that I could complete my high school education. On the day I graduated, the psychiatrist terminated my treatment. I still had the Elavil. If there were suicide hotlines back then, I wasn't aware of them. Anyway, that is when help - intervention - would have made the greatest difference.
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@katherinelalli Back in 1961 I finally disclosed my suicidal depression (brought about by severe family issues) to the dean f my boarding school.
I told him that every single day I felt tempted to jump off the cliff behind my dormitory.
He chewed me out. Within days the school had a fence built there. Neither he nor any of my teachers ever talked to me as a human, just as a girl-shaped container into which to pour academic information.
I hope things are better now, but fear they are not.
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@MLChadwick this is heartbreaking to read. I'm so sorry. Yes, now there is a lot of noise about "if you feel depressed/suicidal...if you are in crisis tell someone, help is available" but I suspect it's just noise.
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I wish the author had opened this story differently. By the time she mentions that people with mental illnesses are far more likely to be victims of violent crime than perpetrators, the idea that the only reason to care about the wellbeing of those with mental illnesses is to prevent them from becoming violent is firmly established. As the author herself notes, there is HUGE stigma against people with mental illnesses, and frankly even if all anyone cares about is the sorts of things she mentioned, opening it this way is a great way to increase stigma!
If we have decided as a society that we can go ahead and pick a group to blame for violence, we should instead pick young men. I don't think we should pick a group to blame! I am just making a comparison to help people get past the internalized stigma. If you would find the beginning of this article worse if it focused on young men, consider that this may be because you've been socialized to find those with mental illnesses acceptable to stigmatize.
Just a reminder that a little empathy will go a long way. There are all kinds of reasons to write about how to make a difference for those with mental illnesses. You don't need to act like we are a menace to society. I would like to see a better attempt at the topic. There are many groups you could imagine substituting here for those with severe mental illness. You may find if you do that, you will understand what a better article would look like.
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the school shootings are rarely done by anyone except a white male teenager. Many African Americans are severely traumatized by this society and have depression and ptsd and don’t run into their schools, most subpar, and shoot children.
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I am a clinical psychologist who has worked with people with severely mental illness, including training with assertive community treatment (ACT) teams. ACT and similar programs are indeed helpful to individuals and their families.
That said, Ms. Brody conflates individuals with schizophrenia spectrum disorders, psychotic disorders, and other forms of severe mental illness, which can be helped by ACT, with individuals who planned and carried out acts of murder that did not occur during episodes of psychosis.
The shooters’ actions may defy our rational understanding, but this does not mean the perpetrators have lost connection to a shared reality. The latter is a hallmark of the psychosis.
When we lump the school shooters into the same category as individuals battling severe mental illness, it excuses the first group and needlessly incriminates the second.
In fact, the research tells us that people with severe mental illness are most likely to be victims of crime, not perpetrators.
Ninety-nine percent of people who need these services are not planning mass shootings. I enjoy many of Jane Brody’s articles, but the beginning portion of piece perpetuates stigma, rather than encouraging people and their families to seek help.
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@Lara Friedrich You may never see this, but I want to thank you for your professional opinion regarding how this article further perpetuates stigma against those of us who suffer severe mental illness. I also appreciate how you point out the violence is the exception not the rule. The stigma makes it very difficult to be honest with others regarding our diagnoses, even with family. Friendships are even more difficult to maintain once an episode has occured and they realize you are not always mentally stable. Thank you, not just for your professional opinion but, also for the work you do in an attempt to make life just a little easier for people like us who suffer.
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@Lara Friedrich Also, ACT is not as widely available as it should be, due to lack of funds.
When my then-19-year-old daughter had a psychotic break, I begged for an ACT team.
I was reminded that she had had only two episodes and hospitalizations, we'd just located a group home for her, and she was starting to be stable on meds.
That early upward healing trajectory disqualified her, as the program needed statistics that would prove they were turning around failing cases.
Only if the desperate efforts of two parents working 2 x full-time (both at our jobs and with our daughter) failed and she decompensated a third time, would she merit an ACT team's protection.
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There are many high functioning members of society with severe mental illness—friends or colleagues you may not even know about. Chances are they pay for a psychiatrist and/or psychologist out of pocket, can afford expensive medications and additional self care like vacations, yoga, meditation, massages, etc. Sadly, many equate mental illness with behavior in the extreme, when that behavior does not signify mental illness, but untreated mental illness, hence the stigma.
Needless to say, our healthcare system needs an overhaul and mental illness, special attention. No one should suffer needlessly as is often the case with mental illness, nor should they lose their dignity in the process. We owe every citizen at least that much.
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The chasm between the rich and poor does much to increase stress, depression and instability. The stress of poverty is intense and triggering. It sends all info the downward spiral. We need help and support groups to push us without stigma. To help us where we need support so we can succeed. In this culture when you have tried hard for years and the loop of depression continues, and poverty continues, one gets very tired.
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I suffer from borderline personality disorder aka bpd, I also suffer from several comorbidities bipolar1 with psychosis, complex PTSD, anxiety and panic disorders. If you want to STOP THE STIGMA then please stop comparing those who are mentally ill with mass killers, because you are furthering the stigma of mental illness when you do so. Suffering from psychosis is like a trip through a horror show that is very real and very painful. I was prescribed resperidone which can elevate the risk of breast cancer due to elevated prolactin levels which never get checked with blood draws for women and the only reason men get blood draws is they might develop breast tissue. I have also been prescribed Effexor, clonazepam etc. All psychiatric meds cause deadly consequences, not to mention how they make you feel and all the consequences of taking them leads to more meds to control the side effects which causes more side effects!
Lets discuss what it takes to see a psychiatric dr. Usually its a three month wait minimum and at least 150$ to see one. When a person with mental illness is in a crisis there is NO HELP and when you are in crisis you usually can't afford the cost to see a dr let alone pay for the over priced meds. Baker act is a joke they don`t help and usually kick you to the curb within 48 hrs.
Maybe you as the author should speak with those of us who suffer and write an article from a more knowledgeable perspective.
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@Nikki I don’t know where you get the idea there’s a “three month minimum” to see a psychiatrist. I recently called a well-known psychiatrist for a second opinion, left a message with his answering service, and he called back in person within one hour. I had a one hour phone session the following day and a second session later that week. When my mother died I was seeing my psychiatrist 4-5x a week and am down to 3x a week now. The trouble occurs in clinic settings where nurses and social workers “triage and prioritize” who gets to see a psychiatrist and how long they have to wait. In contrast, most doctors in solo practice will see new pts relatively quickly if they are willing to pay the going rate. One of the biggest tragedies in the mental health system is the flood of social workers, psychiatric nurse practitioners, and other counselors with pitiful masters degrees in psychology instead of having experienced, skilled psychiatrists treat the mentally ill. These people intrude and insert themselves into patients’ lives and interfere with their getting prompt care. That is why I would never, ever seek out treatment in a community mental health center or some clinic where social workers decide who and when people are seen by psychiatrists.
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@Susan Shapiro You were lucky, the majority of us who suffer don't have the luxury of good insurance or any insurance for that matter. When you speak from a single experience and tell me i don't know what I am talking about. That's unfair when I speak from over 30 years of experience and multiple attempts to get immediate emergency care from a psychiatrist during both psychotic episodes and suicidal ones. Most drs in solo practice do not treat ppl like me as i am seen as a liability for their malpractice ins. So all i have is publicly funded mental health services. Apparently you have missed the issues with mental health stigma in society for those of us who suffer from incurable untreatable mental instability. Since I suffer from borderline personality disorder there is no medication that works to absolve the symptoms though they can help when it comes to psychosis in the short term antipsychotics do help to bring you back to reality but long term they are very dangerous and not meant for long term use. Even on anti psychotics I had to fight to hold onto reality after long term use. Your dismissiveness of my above statement only further highlights the stigma those of us who suffer from severe mental illness face not only from general society, but also within our own community.
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@Susan Shapiro Access to psychiatrists can be very limited outside of urban areas. I suspect it will get worse unless more is done to recruit medical students to go into psychiatry, particularly child and geriatric psychiatry.
17
Oh, where to start. There are so many problems with this article, starting from the framing of the subheading. It is profoundly unhelpful that Ms. Brody appears not to have talked with a single person who lives with a mental health condition, but instead has relied completely on the information provided her by psychiatrists who are clearly wedded to their medical model approach to emotional distress.
Clozapine is a medicine that has adverse effects that can be deadly. It is a medicine that requires weekly blood draws to make sure that one's white blood cells are not being destroyed by it. ECT, while it no longer is performed the way it was in the 70's, still results in brain damage and memory loss.
Be careful of things called "assertive" or "assisted" when it comes to psychiatry - the reality is that such things are often forced upon people who choose not to engage in services. All people, including those who have been labelled with a diagnosis, retain the legal right to make decisions to engage with or refuse services, unless and until that right is taken away by a court and a substitute decision-maker is appointed, or unless it's a true emergency and the person poses a danger to self or others.
Advance directives are not something that should be reduced to a concept that "intrigues" the author of this ill-informed piece. They represent a legal tool that permits people who become unable to communicate their wishes to maintain autonomy and self-direction.
36
@Kathy Flaherty Thank you for this comment. As a person who has lived with mental illness my entire adult life and who has been badly harmed by treatment too many times to count, I am so appreciative of everything you said.
I would like to add that, in regard to the author's mention of people who refuse help because they don't know they're sick...in my case and I would guess in many other cases, I was denied treatment early on, when the symptoms first appeared when I was in my late teens (this was early 80s). I have never denied needing help. I was denied treatment early on, when it could have made the greatest difference, and the treatment I did receive quite often included a good deal of harm. I lost my ability to work. I lost my physical health. I definitely lost any faith I had in the mental health system.
22
@katherinelalli I too have suffered my entire adult life + my childhood. I too have been injured by the meds and the only rx that has ever worked has to be stopped due to liver trouble. I have never refused treatment either but, I have had drs. Refuse to treat me and I have had therapist kick me out of their practice while in crisis because I have bpd. I hate victim blaming and that's exactly what they do. Mass shooters are not always mentally ill, but it is so much easier to blame mental health issues as opposed to admitting that these people who do this have been shunned by society as a whole and they are fed up.
10
@Nikki I'm sorry to hear that you have been treated badly also while seeking help. People who haven't "been there"... haven't been labeled and dismissed like we have...may not understand how an article like this one can feel like more of the same.
As some have said, it would be nice if Dr Brody had spoken to even one person labeled with "severe mental illness" while researching this article.
11
I agree with other responders, not helpful to start with comparing killers with schizophrenia. Kinda ignorant or hypocritical.
So what to do. Clozapine and ECT are not the answers, for sure! They help and Clozapine can get rid of intrusive thoughts and delusions but for a minority of patients. Check out the Broad Institute MIT/Harvard think tank on schizophrenia and other brain ailments. 300 years away from a cure, especially with the US funding—-terrible. We beat AIDS in a relatively shot time. Schizophrenia has been around since the Stone Age.
Go back to Socrates(BC) and Dr. Kirkbride (1800’sUS) They treated severe mental illness or as Socrates called it (Holy Disease) with beautiful places, outdoors, open spaces with waterfalls. Not Jails! Our society hails individualism and wealth but not the fragility of human existence. See impeachment hearings.
Bring back the asylums— beautiful places with caring clinicians that are paid well and the streets would look no where like they are today. Not the asylums you’re thinking of—the ones from 1800s. Google it, run by a Quaker psychiatrist and a famous social worker. Dorothea Dix. Mr. Rogers would fit the bill instead of useless constants who put up more jails.
We need the president or billionaire to have a kid with schizophrenia, then we will see funding that is commensurate with the issue.
22
I have thought the same. Any place resembling (from what I’ve found ) what you’re referring to costs $60,000 and upwards a year. I’d be broke. I wish I could provide this type of environment for my adult son with severe MI. He’s ok now, ish. He lives in a home that’s managed well and he has his own room.
6
Great article!
My brother has schizophrenia, a misery he has dealt with stoically for over fifty years. I'm grateful that he lives in Canada where he has regular visits with a psychiatrist, a public trustee who is responsible for protecting his assets, and a care network that sees that his health and teeth are maintained. He still works and is financially independent, which would not be the case without those who watch out for him, as he is impulsively generous without considering his personal needs. He lives in his own apartment surrounded by neighbors who treat him respectfully. Acceptance and dignity are critical when one's mind is imperfect, and people deserve no less.
People with mental illnesses come with all kinds of personalities and abilities, and can be important and involved members of a society. But it doesn't happen when they're feared, exploited, or shunted aside.
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When Ms. Brody stops being the expert we'll all be better off. She takes a doctor's word for it that the side effects of clozapine are "avoidable."
31
Most of greatest music, art and literature has been created by people who had some kind of mental disorder. Rest of the crowd is normal, but please define normality? Mediocricity, following the rules and being mentally dead long before you die?
8
@Piret Normality is a mass perception of how people are supposed to behave. When you don't fall into this category you are labeled and dismissed.
7
I have a patient in his midfifties with chronic psych issues-he was diagnosed as bipolar in his 20s with schizzoaffective disorder. He finally got his own apartment and was having issues with his upstairs neighbor. The lock on his front door was vandalized in June, and he waited on the common porch for the locksmith.
Fearful, he had a kitchen knife on the table next to him. The police were summoned, he was arrested, and was sentenced to six months in jail for this first time offense. He was discharged to a shelter at the time of his release. He lived in a town that tied white ribbons around trees to raise awareness of mental illness.
How is this happening in 2019?
40
@dr parodneck Thank you for sharing this and for dedicating your career to working on treating patients as people It is so sad how mental illness is disregarded and dismissed and automatically actions are criminalized. Putting in a person in jail does a disservice to them but possibly exacerbating their condition and the cycle continue. 2nd offense longer term in jail. More laws and funding need to be implemented ASAP.
8
This article really leaves out the number one problem for people with mental illness...ACCESS TO CARE. There are very few programs out there. They have few openings. There are not enough psychiatrists. Psychiatrists very seldom take private insurance. Psychiatrists charge a lot that must be paid in full ahead of time and any insurance will be reimbursed after submission of a claim. A family member recently needed care and the initial appointment was $600 paid in full before the appointment with subsequent appointments costing $300 each. Those large hospitals so disparaged in the article have not been replaced in the community. They needed reform not destruction. Current psychiatric treatment is combined almost exclusively with addiction treatment. Though some people with mental illness have self-medicated and are also addicted, the two disciplines should not be combined for all. So again we come back to ACCESS. But, health care is not important to the American government. So, this article will be repeated ad infinitum over the next century while nothing is done.
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@jcs Along with incentives to get medical students to go into primary care medicine, there is a desperate need to get students interested in psychiatry particularly child and adolescent psychiatry and geriatric. You are absolutely right that access to care is a huge barrier to treatment.
3
DJ Jaffe (https://mentalillnesspolicy.org/about-dj-jaffe.html) has worked tirelessly to emphasize the difference in risk of violence between the seriously mentally ill who are treated from the risk posed by those who are untreated. While the treated population do not pose any increased risk of violence, the untreated population of people with serious mental illness ARE more likely to engage in violent behavior. It is political correctness and ‘stigma fear’ that prevent widespread acceptance of this fact.
Hope for better treatments for psychotic disorders is on the horizon. A recent report by researchers from Harvard, MIT and Mass. General identified genes specifically associated with schizophrenia, and the putative function of the genes meshes well with what is known about the underlying cause of the disease (Exome sequencing of 25,000 schizophrenia cases and 100,000 controls implicates 10 risk genes, and provides insight into shared and distinct genetic risk and biology with other
neurodevelopmental disorders). Better medications will increase compliance and allow more people afflicted with these diseases to enjoy some semblance of a normal life.
4
@Jennifer as someone who has been both treated and untreated with a mood and personality disorder i have never felt the need to harm anyone other than myself. Don't believe everything you read, we are not prone to commit acts of violence onto others only ourselves. The few who do commit violence are the exception not the norm.
8
@Nikki The data on increased violence refers to people with psychotic disorders, usually schizophrenia or bipolar disorder. Psychotic disorders are too often lumped together with other ‘mental health’ disorders, which leads to inaccurate assumptions about the risk.
2
As I recall the Sandy Hook shooter, he was never diagnosed with mental illness because his mother protected him. No one knew in advance of the degree to which the Columbine shooters were psychopaths. These people came out of nowhere to make a name for themselves. In today’s paper the article about the farm killer wanting the death penalty so he could be notorious says the same thing. There is no treatment at home for this kind of illness because no one knows about it.
4
Author is wrong, NYC was not less safe in the 40s and 50s than it is today. Where does this come from? A million things have changed since then. Most importantly, the healthcare system has evolved, system of reporting has evolved and crimes have changed from burglaries of homes to computer accounts. Plus, majority of the mentally ill were instutionalized at that time and therefore kept away from city streets, and interacting with civilians.
This is lying with historic indexes in order to further a mission and fill people with a belief yhat we are better now than we were then. Include all the facts and remove the blinders to do adequate journalism instead of fluffy pieces.
10
This is a long post, so you probably won't read it to the end, but if you do, I have a simple request.
I have bipolar illness which, after 30 years, is finally managed, and for the first time since I was 14, I am truly happy. I have always had a loving and supportive family, and lots of money. I attended a fancy college and then a fancy law school. I have had unlimited mental health resources, and been treated at expensive hospitals. My employers couldn't help but know I have an illness, and yet I have remained employed. In other words, I am lucky. But it still took 30+ years to get well. It is difficult battle which requires more than medicine.
With a severe mental illness, when it becomes bad, any worry of stigma you may once have had becomes trivial. It is replaced by desperation and fear for which there is no greater treatment than kindness. It is a free unlimited resource we all have at our disposal every day. When you see someone talking to themselves on the street you don't have to approach them, but please don't judge them. No one imagines that their life will turn out that way. Be kind and feel compassion, and ask your family and friends to do the same. It's not that complicated and doesn't need government funding.
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Assisted Outpatient Treatment (AOT) AKA Kendras Law in NY named after Kendra Webdale is an amazing program designed to help people living with serious mental illnesses who have difficulty with treatment adherence. AOT is essentially Assertive Community Treatment with a Judge.
Due to lack of insight into ones own illness - (about 1/2 of folks with schizophrenia and bipolar disease) - there is no willingness to seek treatment. It makes sense. Why would anyone seek treatment for a disease they don’t think they have.
With the compassionate hand of a civil court judge skilled in AOT, a continuum of psychiatric treatment and care is provided to participants. Adherence is 2-fold. While the participant is required to adhere to treatment, the mental health system is required to provide it. There’s no dropping patients for missed appointments or any other excuses.
Its the same needed continuum of psychiatric treatment and care for people who will voluntarily seek help. It’s just about meeting people where they are.
Everyone should read Bedlam!
6
Let’s not overlook the additional, unmentioned, hurdle of insurance denials. Medical necessity is a matter for patient-facing providers, not “independent” insurance company reviewers. Federal parity laws exist to ensure fair coverage, though aren’t yet fully observed by too many insurers anxious to deny for: not the right treatment, treatment worked so not further necessary, treatment not working so stop, maximum days consumed, etc., etc.
19
Thank you Jane Brody for paying attention to serious mental illness.. I'm working on a book "Beyond Madness: Serious Mental Illness and What to Do About It" that will be published next year. Message of my book is that although science has taught us much about serious mental illness, this knowledge usually does not get to the people with mental illness and their families who need it most. We can do better and we do know how. Your column is an important first step.
Rachel Pruchno, Ph.D.
8
When a mass shooter is described as "mentally ill", I always wonder which came first - the shooting or the "mental illness". Was the shooter "mentally ill" before the shooting or was that label applied only after the shooting? Is it a given that if someone commits a mass shooting, he must be "mentally ill"? Are there mass shooters who aren't "mentally ill", but just angry? Isn't labeling a mass shooter as mentally ill an easy way out? Doesn't the label stigmatize the millions of people who are mentally ill, but lead ordinary and non-violent lives?
34
As a person with bipolar disorder, I know that medications can be a great help in controlling the illness. But they must be taken on a regular basis and I am aware that mental illness makes it difficult to remember to take the meds. And someone who is homeless can't afford them.
We need to begin phasing in national health insurance so that nobody with a mental illness goes without the meds they desperately need in order to live the most "normal" life possible.
26
My brother has been schizophrenic and mentally ill pretty much his whole life. He's not dangerous and does "okay" as long as he takes his meds (okay meaning he doesn't hear the voices or exorcise demons on the street). He gets public support from SSDI and SSI and he can live pretty peacefully in a licensed board and care but it's become almost impossible to find a place for him. He requires very little, but no one has any responsibility for finding a place for him. We managed to find a new place for him when the old one closed, but just by the skin of our teeth, and we have to pay a quite large "voluntary" contribution in addition to his benefits that are supposed to cover this. He doesn't need any expensive treatments or anything, but without a family to pay a lot of extra money there is nowhere for him to go.
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@Caroline why doesn’t your brother live with you or another family member? I’m not lucky enough to have siblings, but if I did I would definitely welcome a disabled sib into my home. Just don’t understand families who put “loved ones” into nursing homes and other institutions instead of living with their families.
@Susan Shapiro You really don't get it, do you?
When my younger daughter had a psychotic break, she needed 24/7 care. How the heck were my husband and I supposed to provide that while working full-time at jobs a 45-minute drive from our home?
Put yourself in our place, with a beloved child who was either curled in a fetal position in a corner sucking her thumb and hallucinating or wandering outside in all weather convinced she was someone else somewhere else and doing whatever the voices told her to do.
If one of us quit to take care of her, say, 18 hours a day, how could the other stay awake to watch her all night and still drive to work in the morning?
With half our income gone, how would we have paid for the specialists she had to see?
We were *delighted* when I tracked down a group home that would accept her. They quickly got Medicaid for her (they knew how), a better psychiatrist, and a new therapist. They soon found an apartment for her plus support workers to check often.
What would you have done?
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@Susan Shapiro
Yes and until you have that situation thrust upon you it is easy to judge....
12
I agree with the other comments that the opening of this article does nothing but perpetuate the stigma around mental health. What was the point of opening in this way? It's for shock value which is in poor taste.
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@ConcernedMD Again, time for Jane to retire.
13
@ConcernedMD I agree with you completely: Jane Brody, you really missed the boat at the beginning of this article. Very poor taste, indeed
21
I feel some measure of re-institutionalization of those seriously mentally disabled will or should become the driving force behind concrete solutions for our mentally ill family members and/ or neighbors. As it relates to NYC and the decentralization of corrections in this city from Rikers Island, stake holders should require that any community jail built in the 5 boroughs will have or construct just as many beds for mentally ill persons as it will have for criminals. This way, by locating mental health facilities within these new local jails, will allow for almost direct family, community support and health provision, in a safe and easily accessible care center for those in real need. We are made safer then. Our leaders must do better.
12
As a father who has advocated for his bipolar son for 30 years I think this article clearly summarizes the deplorable state of mental health care in this country.
One statement by the author; that families would do well to recognize early the symptoms of psychosis is not so easy. Why? In the early stages, often in late adolescence, the line between perception and delusion is not black and white where one day the person is psychotic and remains observably psychotic. The early stage person could be presenting normal adolescent behavior one day and manic delusions the next and go back and forth.
Another important point omitted by the author is that antipsychotic medication (strong tranquilizers) have side effects patients do not like period. Thus, they prefer not to take them especially when they feel normal when unmedicated and delusional, manic and having hallucinations.
In my view the Navigate program could well provide an path to stability for many. I wish such a program was available to my family as my son went in and out of jail and hospitals until he finally became medicine compliant.
I am grateful to Jane body for bringing ti to the readers attention the failure of our mental health system. It is heartbreaking for me to see so many homeless mentally ill addicted people sleeping on the streets.
21
Psychiatry is a failed profession, except, perhaps, for patients with flagrant evidence of severe mental illness, i.e., violent delusions, psychotic breaks, debilitating or destructive highs or lows. Diagnoses are based on subjective assessments of subjective clusters of symptoms in the "bible" of psychiatry, the DSM-V. These criteria are developed by largely homogeneous groups of mostly white men who rely on research outcomes from studies of debatable quality. This alone makes clinical judgments inherently questionable, and more often than not, biased against women and other ethnic groups. The go-to treatment is high-risk polypharmacy, an array of drugs with potentially devastating side effects. Their combined impact on the human brain and body are unknown, yet they're prescribed and touted with a certainty born of unmitigated hubris. Once diagnosed or misdiagnosed with a mental illness, it can difficult if not impossible to shake the label, to be heard or believed. These dangers need to be recognized to prevent vulnerable people from being snared in a system that can do more harm than good. Stigma and lack of understanding sustain our dysfunctional mental health system. Most people who wind up in it don't need to be drugged into a stupor, feared, or judged insane. They need to be seen and heard, enrolled in evidence-based group and individual therapies, and backed up with enough ongoing support to apply new skills, heal, and reclaim their lives.
20
@rb A lot of words. The average patient wants more medication or different medication. Most of the people who worry about being "drugged into a stupor" are those in denial and resisting treatment.
6
@rb thank you. In many ways, I think i stopped being heard or believed somewhere around 2004, after a series of electroshock treatments. My "treatment resistant depression" did not remit. The ECT doctor said, "You have borderline personality disorder. That's why the ECT didn't work.". Within a year, I lost my ability to work and became classified as permanently disabled by the SSA. What I needed the most was to be heard, but once I got that dreaded diagnosis that happened less and less. I don't know if anyone can understand how painful that is...to be routinely silenced and humiliated by treatment providers, family and friends, unless they've been through it. Thank you for speaking up for "people like me".
11
@rb So much truth in your comment! Psychiatry has not only failed very many people it has damaged and severely harmed very many with their stigmatizing labels and drugs that are incredibly poisonous to the brain and the body. We need a return of truly helpful places like Soteria House or Stabilizing Houses such as they have in Israel where people in distress and altered states are treated with kindness, respect and dignity.
If truth be known the drugs often make people worse in the long term instead of better.
6
The biggest obstacle to providing good safe mental heath are the HIPPA laws.
Originally created to protect patient privacy, they effectively cut the patient off from his/her in many cases loving family. These families can provide advocacy ,support treatment, and protect the patient from abuse. Hi
24
While there does need to be an improvement in the treatments available for mentally ill people, I hate the opening of this article because there’s a lot of stigma that mentally ill people face and this contributes to it.
I have Asperger’s and Schizoaffective disorder and I’ve been in psychiatric hospitalization myself, but I would never hurt anyone. Arguing for better treatment of mentally ill patients can be done without using scare tactics.
Mentally ill people are always the scapegoats when a mass shooting occurs, and there’s rarely a nuanced discussion about how mentally ill people are more often the victims of violence than the perpetrators, the role of racism, sexism, and male anger in mass violence, and one of the main solutions to this mass violence, gun control, is often skipped over entirely.
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For perspective, we have to remember that violent crimes are more likely to be perpetrated by persons considered mentally normal.
It is incredulous to me that the author would lead this article with a misleading emphasis on crimes committed by mentally ill people.
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I wish this article provided some links to more information about treatments with clozapine and ECT.
9
Clozapine is not a "miracle drug" for everyone; it can be akin to zombie powder that puts you to sleep for 13 hours a day, drooling on your pillow until it is soaked. ECT even in its current use today wipes out parts of patients memories. Is this how far we've come?
21
@John Q Public But it is a miracle drug for some. These illnesses are very poorly understood, so it’s not surprising therapies are hit or miss. Over the last 200 years, vast numbers of patients have graduated out of psychiatry and into better understood neurology, endocrinology, infectious disease, etc. Medical progress is always too slow for individual patients. Debilitating side effects of therapy are not limited to psychiatry.
7
If patients complain or even mention concerns about the ineffectiveness of their treatment, or “side effects”, they are not only dismissed- its further “evidence” of their illness. When antipsychotics cause akastheia (agitation, toxicity)- doses are typically increased not decreased. “Side effects” are diagnosed as the worsening of the original condition.
13
@John Q Public The only drug that worked for my schizophrenic brother was chozapine. Without it, he was a loony tune and could not utter one coherent sentence, let alone lead any form of meaningful life. I found this out when his clozapine was stopped for him to have an invasive medical procedure under anesthesia. Even his social worker did not recognize what had happened; she thought he was just grumpy. It took me several days (due to HIPAA laws) to be able to talk to his doctors and get him back on Clozapine. When he could talk again, he told me how frightened he'd been that he might never come back, that there was nothing he could do about his craziness. Clozapine might not work for everyone, and requires weekly blood tests to ensure stability, but it's worth such testing, especially when nothing else works.
10
Assertive Community Treatment has been intensively studied for over 30 years and should be part of standard community mental health care across the country. But it isn't. It's been an uphill fight getting funders to realize that mental health care is health care, not some add-on.
15
@Margareta the waiting list is months long. You are so right. I think it would be helpful to stop calling it "mental health care" and call it "psychiatric care." Psychiatric illnesses are medical, biological illnesses, among their other attributes, and to neglect the medical aspects is to do our patients a disservice.
But you are completely right in your emphases on ACT the fundamental essential nature of psychiatric care to our population.
9
The real problem is that many mentally ill people refuse treatment and the law protects that denial as a right.
So, there will be no solution to the link between mental illness and homelessness, crime, ETC.
15
@RP : That may be true for some, but there are many, many others who want treatment but can't get it. Sometimes it's because they lack health insurance. Sometimes it's because the mental health providers don't take insurance. Many times it's due to a shortage of psychiatric care, especially for young people but pretty much across the board.
There are also amazing "partial hospitalization" programs where people at high risk can spend the day at a hospital-based treatment program and then go home for the evening. This allows people to get help with the cost of going in-patient and also while being able to continue to tend to their families (if need be). But the programs are few and far between.
We need more addiction treatment centers, more partial hospitalization programs, more therapists trained in concrete methods that work (like cognitive behavioral therapy) and more people who can prescribe meds (psychiatrists and also psychiatric nurse practitioners).
19
@Rose And insurance companies and individuals willing to compensate licensed mental health professionals commensurate with their education and experience.
7
@Rose
I'm going to politely disagree on the "amazing" partial hospitalization. My daughter is mentally ill and has been hospitalized numerous times. The partial hospitalization programs tend to focus on drug and alcohol abuse (i.e., addiction treatment), which does not apply to her.
You state that "we need more ..." I don't disagree; however, that also means that we need more AFFORDABLE treatment options. All the hand-wringing in the world will not help mentally ill people who can't access the already existing systme.
15
As opposed to Alzheimer's or cancers, the societal stigma against mental illnesses keeps any meaningful discussions, legislation, etc from gaining any real traction. Sadly, the best way for us to deal with homelessness, workplace and/or school shootings, PTSD, etc is by providing easily accessible and affordable for all mental health care.
13
The state of treatment for mental illness is lamentable, but not for the reasons Ms. Brody would have us believe. Mental illness is mistaken all too often as an illness of the mind, where drugs are at the vanguard of treatment. In fact most mental illness is a complex mind/body disease where causative factors are infrequently investigated or even considered. Hypothyroidism, Adrenal weakness, heavy metal toxicity, chronic infections, EMF effects, vitamin and mineral deficiencies, and other toxic exposures lie behind the majority of mental illnesses. Certainly trauma plays a large role, but its effects are often mediated by environmental effects. Drug therapy addressed not of these causative factors, and ladles a new level of pathology by suppressing affect and the personality more generally. Physical side effects frequently create new health problems to offset what beneficial effects the drugs may have. Psychotropics are helpful in the short term management of psychological symptoms but their effectiveness for long term treatment is not well established by the evidence. Yet Ms. Brody and her sources have nothing else to offer, so she encourages the use of conventional psychiatric and psychological treatments. By encouraging this, she helps to perpetuate the problem that many people continue to have undiagnosed environmental illnesses with psychological manifestations. These people will be stuck with superficial symptom oriented treatments and not get better.
16
@Samantha As a psychotherapist with over forty years of experience, I can count on a few fingers the number of individuals with schizophrenia, bipolar disorder, or major depression whose illnesses were caused by the factors you have listed.
42
Most psychotherapists dont even believe assault, poverty, or experiencing other violence or adversity can cause depression or anxiety, because they are committed to mental conditions being “genetic” and mysteriously unrelated to other context.
8
@Samantha As the sister of 2 brothers with different mental illnesses (autism spectrum and schizophrenia), I can attest that in the '50s, when no other methods or drugs were available in rural Illinois, we tried nutrition, vitamin therapies, and medically ruled out chronic infections, adrenals, toxicities, etc. Nothing helped and both brothers got progressively worse. One improved much later in life when Clozapine first came on the market, but the other, who may also be bi-polar and suffers from acute recurring depression, refuses all help. It's fine to do the nutritional stuff along with proven medical therapies, but don't fool yourself that nature alone will cure these very serious illnesses.
18
I am a psychiatrist and I work on an ACT team. We have too many barriers to providing treatment to people with chronic mental illness and they are all legal/societal. We have some very good medications. Yes, of course they have side effects. All medications have side effects. The law is not on our side in helping patients take their prescribed medications. The criteria for involuntary hospitalization are so extreme that all but the most acutely and imminently dangerous will not meet them. Due to the insanity of the confidentiality laws, which are generally misunderstood by almost all engaged in medical care, we are not even able to talk to family or other medical professionals without the patient's explicit written permission, which can be hard to get. Rather than making psychiatric hospitals humane and beneficial, we used circular reasoning to declare them inhumane and then decided to close them. The catastrophe that has happened here in New York, with no beds AND no or inadequate housing AND insufficient clinics, has been replicated in most if not all other states.
A very smart psychiatrist in Wisconsin said that our patients are "rotting with their rights on." This is the pithy truth. When we value care and treatment of treatable illness over autonomy (because psychotic and depressed people often make very poor decisions they come to regret), maybe the situation will improve.
I'll still be making my ACT rounds, which I do love.
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@Ellen Tabor You are exactly right. No sane person chooses to exercise his human rights by living on a filthy sidewalk and refusing to be treated for a life-threatening illness. Until there are new laws and new housing for the chronically mentally ill, the sidewalks will continue to be lined with very sick people unable to help themselves.
18
ss@Ellen Tabor The HIPPA laws, regarding persons with serious mental illness, must be changed. These laws, as written, prevent effective family involvement in too many instances.
23
@Ellen Tabor I agree 100% We have friends whose family member has a dual diagnosis - i.e,, the person self-medicates with illegal drugs, but refuses prescribed medications for a diagnosed mental disability. Due to HIPAA, the family is unable to obtain information, including a diagnosis, or work with mental health professionals to provide needed care.
Nor has the family consistently been able to obtain in-patient treatment for our relative, even after violent episodes in which people were physically attacked and damage done to property. The standard for commitment is too high, and the standard for release too low.
The family is being torn to bits. The relative is stable now but, without input from doctors, no one is sure how to provide care or recognize and cope with the symptoms of the disease. Everyone is operating in the dark, including the ill person, who is suffering needlessly because - a symptom of the illness - all help offered or tried is, sooner or later, rejected.
An attending psychiatrist at a local hospital told the family that the mental health treatment system is broken and that laws governing treatment -- commitment standards, HIPAA -- are "immoral" - his term.
The next time a tragedy occurs, read the media accounts closely. In too many cases, you will find that a family desperately tried to obtain medical intervention for the perpetrator, or obtain information about his or her illness and treatment, but was thwarted by our current laws.
11
Drugs have to be taken to work. Many mentally ill people quit taking their medicines. Also drugs don't always work or lose their effectiveness and changing/seeking new ones that will work is quite the ordeal. Some people are just medicated into sort of a half life. At least 3 people in my extended family have struggled with these issues. And these are people with resources and other people to rely on.
16
". . . when mental illness is recognized in a family member, the person may resist treatment, often claiming that he or she is not the one who is sick."
That’s the mindset my husband & I are struggling with regarding my brother who is bi-polar.
He was doing great 18 months ago. He had cogent, calm, rational conversations about everything. Any symptoms of his bi-polar illness were undetectable.
Then he was diagnosed with cancer. He lived with us for a year. His remaining months with us began deteriorate. He took his daily meds in front of me. But with time, their effectiveness began to wane to the point where his behavior became increasingly more animated and agitated and alarming.
When he returned home, I knew his unsettling mental state would only deteriorate. He has not answered his cell phone or any of the many letters I sent in months. The only reason I know he is still alive is because a local merchant calls me weekly to say he sees my brother every day.
I constantly worry about him. It’s practically a 400 mile round trip to his home from ours. The times we saw him, he would scream at us to leave him alone as he slammed the front door in our faces.
My brother is 74 years old. It’s terrifying to feel so helpless while consumed with deep worry.
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@Marge Keller
The odd component about my brother is that he was an exceptional medic when he served in Viet Nam.
The day-to-day existence he has been surrounded with for the past 50 years continues to be an overwhelming struggle and battle for him.
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The bigger question is HOW do we force the mentally ill/severely addicted to get treatment? Here in the Bay Area, we are in crisis mode. There are unsheltered mentally ill and severely addicted people everywhere-- even in suburban parks and shopping centers. We have shelter beds available. Medi-Cal covers a lot of treatments. There are resources, but not a lot of interest in utilizing them.
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@Abby it is doable if Society wishes to have it done. It does not. Please see my comments above. It is a delusion held by lawmakers that psychotic individuals who are homeless, ill-fed, medically frail, ill-clothed and lonely along with being overtly psychotic, easily preyed upon by unscrupulous people, are choosing this way of life. They have been relegated to it by the mistaken notion that all decisions are equally valid and should be respected. It breaks my heart that we cannot treat more people and treat them more easily.
I am extremely familiar with the not-so-distant abuses perpetrated against the mentally ill; these were somewhat reduced by greater safeguards for the rights of the patients. However, we have certainly swung too far in the other direction, where our neglect as a society has become another form of abuse of these ill individuals. No one would abandon patients suffering any other illness (except addiction, of course) to their own symptoms without attempting to intervene. Only the mentally ill are greeted with a shrug and the requirement that they be sane enough to request treatment for the very illness that prevents such requests.
It's an American tragedy.
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@Abby Ihabe to ask—do the shelter beds require people to line up each evening, and then leave in the morning—- to go where? And line up again the next evening? How does this work for people with severe mental and emotional illness?
My brother-in-law and so were diagnosed with bipolar disorder. My brother-in-law was able to function but not without relapses in depression. He had the support of his wife and family and worked as a teacher for 30 years. My son was diagnosed at age 36. He had "treatment for five years which only served to balance him out to the point where he lost all motivation. His monthly visits to the psychiatrist were a waste of time. The visit had the same routine questions - Are you taking your meds? What's been going on? If he requested drugs for sleeping, they gave them. He was erratic taking his meds and yet, the doctors continued to prescribe what he asked for each visit. The most truthful statement in the article is what my husband and I have been saying, "How can people with severe mental illness make clear decisions about going into a treatment program or not?" They can't. We are so hung up on human rights, that I can't understand how we think we are preserving these rights to the mentally ill who are living jobless and homeless on the streets. Our mental illness system has a myriad of problems, some of which the pharmaceuticals and health care system have greatly contributed to. I don't see any way out as long as our Congress has their pockets open for the lobbyists who control what happens in many of our systems.
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@Diane Steiner
I truly can identify and empathize with your exhausting and troublesome situation. I can imagine that practically every day feels like a ton of bricks are weighing down on your shoulders.
Bi-polar illness is always labeled as a mental health illness but in all reality, it's actually a medical illness. Referring bi-polar sufferers to a psychiatrist is ludicrous because the condition centers around one's brain being wired wrong and different than other individuals. It's like sending a dementia patient to a dentist because they forget to brush their teeth. One profession has little if anything to do with the other.
I truly wish there was more research in the bi-polar field. The various meds my brother has been on had been effective . . . until they weren't. He never really suffered from depression but rather great anger vs. highly agitated states of extreme animated reactions to everything that came his way.
Every day I worry if he will make it through alive and unharmed. He is an extremely troubled and frustrated person in a world in which he has never found a comfortable fit. I cannot begin to fathom how he feels or how he copes on a daily basis.
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@Marge Keller Do you not understand that a psychiatrist IS a medical doctor with a specialty in mental illness? A psychiatrist is EXACTLY the right doctor for such cases.
My father was first diagnosed as "manic depressive" back in the 1960's when there were very few treatments available. Eventually he found a good psychiatrist and got on lithium with the dose varying depending on his mood - it allowed him to continue his dental practice for the rest of his life rather than being debilitated with severe depression alternating with bouts of excessive spending during his manic episodes. His psychiatrist saved both him and his family.
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@Renee Hoewing
Yes I am fully cognizant that a "psychiatrist IS a medical doctor with a specialty in mental illness." And trust me, I am thrilled that your father found someone who was a godsend for him and for your family.
Unfortunately, my brother has not been nearly as lucky. He too had been on lithium for awhile, but eventually that became ineffective. The pills he was on most recently had been wonderful and extremely effective - until they weren't.
My husband and I began to see tiny cracks in his emotional facade a year ago which only began to grow worse.
Presently, he is out there, out of control, and somehow getting by each day.
It's frustrating, scary and extremely upsetting when we are unable to help him in any way. He's extremely shrewd when he does see his doctor because he puts on a very "normal" act for that 45 minute visit.
The bottom line is he hates taking any meds because he always said it takes away his sharpness and he ends up feeling numb, emotionally.
My struggle is that I view his illness as a medical one more than a mental one. His brain chemistry is out of whack, causing him to behave in a constant, extreme agitated state. It's as if his brain is running 100 mph and he can never slow it down, much less turn it off.
5
I grew up with a brother who was mentally ill. He’s been homeless, in jail, in drug rehab, lived and traveled to several countries and is pretty hostile and is prone to conspiracy theories. Now he is living in China, married to a woman there and they have two kids. Apparently, he is also an astronaut and living for long periods of time on the moon. It’s hard to know what to believe, but he certainly has a creative, brilliant, but troubled mind. My parents tried several treatments over the years, but nothing seemed to work. He hasn’t killed any of us yet, and not anyone else I am aware of. I wish there had been and were more answers and better treatment.
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Ms. Brody should have mentioned that a major reason why those hospitals could be emptied out was the introduction of modern drug treatments for the major mental disorders beginning in the 1950s. Of course, Times readers might easily assume, thanks to Benedict Carey its "mental health" expert, that the only reason these are prescribed is to make money for pharmaceutical companies and psychiatrists and not to help patients.
And as far as underfunding of those community mental health centers, let us recall that in NY the then governor, that great liberal paragon Mario Cuomo, took the money the state got from selling off the real estate of those closed psychiatric hospitals and put it in the general government funds rather than using it to create outpatient centers as was supposed to be done. And when his son became governor, one of his first acts was to cut funding for state mental health programs.
In California, both Gavin Newsom and Jerry Brown denigrated psychiatry.
In fact, one of the very few things it seems conservative and liberal office holders agree on is that the treatment of the mentally ill is far down their lists of priorities.
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The most effective treatments are cheap or free. Lithium is the most effective treatment for many mental health conditions but is underused because it cannot be patented.
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@A Nash Lithium might seem great, but it isn't. I took it totally as prescribed, and also faithfully got my blood tested for 12 years. I was taken off of it in 1996. Now, decades have passed. Because I took lithium I now have kidney disease, which is a terminal illness and takes the lives of many, many people far too soon. Is this how we should be treating people whose behavior or thoughts might seem troubling to others?
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I have taken lithium for 25 years with no side effects,no kidney damage. I am aware of several drug interactions which cause the kidney damage you describe. NSAIDs and diuretics both raise the blood level. I had to find this out on my own.
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I don't know about cheap or free, but Lithium definitely is a miracle drug for some people as long as the prescriber is careful to check for some of the known possible risks, like thyroid issues. I also thought it was strange that it wasn't mentioned here. I am sure there is a place for ECT, but you can't just not mention Lithium if you're going to bring up ECT.
3
It's understandable you start your article with examples of the horrific acts some mentally ill people can perpetrate on innocent people, but it's also true the vast majority of mentally ill people don't commit these kinds of atrocities.
Still, we need to draw attention to the needs of the mentally ill and how our culture responds to them.
I speak from experience when I say the stigma associated with mental illness frequently impedes treatment, understanding and acceptance.
I've watched as two mentally ill neighbors committed suicide through alcohol and drugs. Nothing could be done for either one of them.
A relative became schizophrenic in her late teens and ended up dying needlessly from cancer, because she didn't want treatment, or was afraid of going to the hospital. The ensuing heartbreak haunts all of us.
We must do a better job of serving the needs of the mentally ill. I would start by eradicating the unnecessary and hurtful stigma associated with mental illness and open our hearts to those who desperately need our love and help.
We are only as strong as our weakest citizens.
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I don’t find that first paragraph understandable at all. It is misleading and offensive.
4
Mental illness has so many facets to it that have been written and spoken about in countless ways. My loved one has had it for over twenty years and I am amazed that we have still managed to live to tell the tale. What do others need to know in my opinion? If you care for a mentally ill individual, you need to be or to have a strong advocate assigned for him or her. You must be like the lion that jumps through the fiery hoop. Your money and your time will no longer be yours alone. Don't expect too much help from bureaucrats that are also up to their ears in paperwork. Obtain guardianship, if possible, to facilitate and expedite help. Understand that medications help, but that is just part of the solution. Managing and accepting your loved one's disease and trying to keep him safe from yourself, himself, and others takes its toll, so be kind to yourself and enlist others' help if things go beyond your capabilities. That includes applying for disability benefits, committing the individual when it is for his own good, keeping documentation of his medical records, and enrolling him in a service that offers free or low cost medical help if he does not have insurance. This all takes time, but it's worth it.
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Mental illness is one of the most common conditions afflicting a wide range of the population. It's also one of the most underfunded diseases in terms of both research and treatment. Although the closure of mental hospitals in the 80's was well meant, and for most people, was the right thing to do, too many individuals were simply dumped on the street. Yes, there are some very effective programs, but they are insufficient to meet the needs of the mentally ill and their families. Local programs that provide appropriate medication and other treatment, as well as ensuring that the mentally ill are supported in the basics of living - housing, food and employment - are at best spotty. In many cases waiting lists for day programs, treatment centers, and housing are months or even years long. Complicating factors are the fact that a number of mentally ill people don't want to take medication or receive help, and the nimby-ism that makes it difficult to establish treatment centers and housing in safe neighborhoods. So either families take on the burden of caring for mentally ill loved ones, or they are on the street or in jail. The ultimate irony is that a good local program costs less than jail and is certainly more humane than allowing someone to be homeless. Jane Brody is correct that this sad situation occasionally results in crimes, but it's the mentally ill individual who is at the highest risk of violence or death
19
The State of Mental Healthcare in America is a National Disgrace.
Law Enforcement may be a first responder, however the ER is the first entry into care. Inpatient "care" is crowd control. Thats IF you can find a bed.
Education and Stigma. Patient compliance is important. Patient compliance cannot be achieved with a hammer and a blue piece of paper. It takes understanding and compassion. This must be woven into society.
Stop treating mental health like the flu. The laws of healthcare time and space are foundational different in mental illness. Payers must support more nuanced medical policy. Current policy is a direct reflection of stigma and bias.
A 22 year old patient who is in psychosis should not be solely in charge of their own care if support resources are engaged. If you are a parent of teenagers to consider the directive contemplated at the end of the article. As a parent, the law is not on your side.
100000 young people experience their first psychosis each year. Are young people aware of this and the early warning signs... are you? The first line of defense is understanding. Early intervention always equals better outcomes.
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By starting your article listing murders by people with mental illness, you reinforce the stereotype of violent schizophrenics that you later complain about.
It's unfortunate that violence always captures our attention while the daily grind of mental illness and its impact on families is ignored. Your article outlines the treatment options available and the limited funding for implementing them. but we must be careful about the message given about danger and mental illness. It's a very small segment of the problem.
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I too thought this first paragraph disturbing Reinforcing that cruel stigma is irresponsible.
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@Barbara
Extremely valid point.
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@Barbara Agreed. To Dr. Brody: you write that the consequences of not taking medication are epic, but would it not be more relatable to describe the devastating *non-violent* consequences of mental illness like ruined relationships and loss of job or career? Frankly, far more people miss these common signs of deepening mental health problems because of the very stereotype you perpetuated in your essay.
1
One more argument for a Medicare for all type program.
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@Patricia Not unless one makes it clear that psychiatrists cannot "opt out." Most do now as do good psychologists. Good mental health care is hard to get.
20
Money for public mental health was cut back when localities were dealing with results from the 2008- recession, and never increased.
Treatment should be available, period, without regard to ability to pay, if it is to be effective. It's better for the individual and for society at large.
Families who care for a member with severe mental health problems do need support, but trying to convince an angry, paranoid or delusional person to take meds or stay in treatment, is often an impossible job. I love the idea of providing familial psycho-education, but also worry that that might also mean expecting the family to do the impossible, andto it more skillfully than the mental health providers. ( of which there are not enough).
There does need to be a way to mandate treatment when needed. Kendra's law in NY does help, altho' I wonder if it is used as effectively as possible.
As for all the jails and prisons substituting for the mental hospitals of yesteryear: it's a commentary on our greed and ability to relegate those who cannot compete to the shadows of life. In the midst of constant boasts about the economy, almost nothing is provided to address this issue of severe mental illness affecting those arrested, and those imprisoned. or those on the streets or in homeless shelters, imprisoned by their own demons. ( and the conditions of our prisons arguably contribute to mental illness as well.)
22
There are some crimes that are almost impossible to forget.
For me, they include the death in 1999 of Kendra Webdale, an aspiring young journalist who was pushed in front of a New York subway train by a 29-year-old man with schizophrenia who had stopped taking his medication."
That is a half truth:
Andrew Goldstein, homeless, had been discharged to the streets by three NYC hospitals. He was without medications, support of any kind.
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@Harold A Maio moreover, he had gone to a hospital on his own and been discharged, despite his request for medications.
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@Harold A Maio
Exactly. https://www.nytimes.com/1999/05/25/nyregion/hospitals-face-lawsuit-by-kin-of-victim-in-subway-push.html
7
@Harold A Maio, Ellen Tabor, & Nina Bernstein according to the facts that you are pointing out there is culpability for what amounts a bloody murder.
The 29-year-old man with schizophrenia was not discharged by the hospital but a person working for the hospital, that had a supervisor, and board of the hospital overseeing the supervisor. They all belong in jail. The longest sentences going to the individuals on the board of the hospital.
6
You are correct when you write, “Contrary to politically motivated claims, I learned that people with serious mental ills are not necessarily prone to commit violent acts — they are far more likely to become victims of crime.”
But your article leads with inflammatory examples of violence purportedly perpetrated as a direct result of mental illness. This is continues the false narrative that homicides (mass killings and others) are committed mostly by crazy people - a narrative that distracts from actionable policy solutions to reduce violent deaths in this country. It also empowers some politicians and lobbyists to turn attention away from gun control.
Mentally ill people sometimes commit violent crimes not because they are ill, but because they are people.
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“Mental illness is highly treatable, and many cases can be completely eliminated with effective treatment, or they can be managed effectively ...". There is a reason all these people stop taking their medications. Until the psychiatric profession & pharmaceutical industries deals with that issue, "effective management" is a fantasy. As for "mental illness completely eliminated" - probably as rare as "spontaneous remission" happens in cancer (and likely, also, just spontaneous remission).
21
It has been said and is true that you can lead a horse to water, but cannot make him drink.
Intervention into mental illness and its effects requires that the person affected must be placed into supervision, sometimes against their will.
How does society identify and treat such individuals? Unless some crime is committed or some strict societal norm is violated, you can't. Even if a person is under surveillance or drug treatment program, if they are not hospitalized or otherwise incarcerated, they can stop treatment.
It comes down to the patient's rights or public safety. I would opt for public safety.
12
There needs to be a automatic Medicaid coverage at the time of diagnosis for adults without insurance. My BIL was diagnosed during a Baker Act then dumped on the streets. He was incapable of filling out the paperwork work the drug companies demanded for reduced cost drugs. He could no longer hold a job, so reduced cost wouldn't help. It takes two years of disability before eligibility for Medicaid. Since his diagnosis, he has spent years cycling in and out of jails. Only one of them ever treated him. He was stable for several years after that because he had VA support. He went off his meds a couple of years ago. Another Baker Act, another dumping out on the streets. He is currently in jail awaiting trial for stealing less than $5 dollars. He has been there since April. He doesn't understand he has a mental illness. The public defender doesn't care.
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Good care costs money. You need good providers and good support services, and both cost money. Managed care hasn't provided the money required to ensure the safety of the clients or the public, let alone help clients live full lives.
Severe mental illness can be as devastating as cancer or a spinal cord injury. We are still stuck in a state of shame that characterized society's response to physical and cognitive disabilities 50-75 years ago.
Thank you for highlighting both the problems and some of the solutions to help people live better lives.
25
In the meanwhile, as community initiatives are ramping up, far too slowly, the number of inpatient beds have decreased by more than half in the last decade, especially in NY. And many of these community programs assume the patient has somewhere to live...which they don't. So there are no inpatient beds anymore, and no community beds. The state can implement as many programs as they want in the community, but if the people who need them don't have hospital beds or community beds, then to the streets or the jails go they.
24