I’ve long scratched my head at one of the arbitrary political lines drawn in the sand in the world of mental health and mental illness advocacy — “serious mental illness.” (Some people refer to it as “severe mental illness,” but the correct term is “serious.”)
Focusing on this division is a lie. It is a lie told to Congress and to the public with earnest testimonials. But also with little evidence that it represents a valid — or meaningful — scientific distinction.
Ask anyone who’s been living with a mental illness for any length of time — a year or more — and they’ll tell you it can be severe, debilitating, and even life-threatening. I’ve known people who’ve lost their jobs and livelihoods over severe anxiety. Or depression. Or yes, even ADHD. I could tell countless stories of lives ruined, paradise lost, and homes foreclosed upon.
Yet in the upside-down world of mental health — where advocates should largely be on the same page that mental illness can be successfully treated for all — there are those who believe people with mental illness should be divided into two classes. One class of patients — those with serious mental illness (SMI) — should be treated better and with more resources than the other class (those without).
The term appears to originate with the Substance Abuse and Mental Health Services Administration (SAMHSA), based upon the 1992 federal law, the Alcohol, Drug Abuse, and Mental Health Administration Reorganization Act. That law requires states to include prevalence rates of serious mental illness in their application for federal funding, so SAMHSA was charged with creating a definition:
“SAMHSA defined SMI as persons aged 18 or older who currently or at any time in the past year have had a diagnosable mental, behavioral, or emotional disorder (excluding developmental and substance use disorders) of sufficient duration to meet diagnostic criteria specified within DSM-IV (APA, 1994) that has resulted in serious functional impairment, which substantially interferes with or limits one or more major life activities.”
Remember, this definition was created in order to serve the purposes of states applying for grant funding — basically, a simple definition meant to fulfill a legal requirement. It was never intended to differentiate between two groups of people with mental illness — those deserving of our attention, and those who are not.
That hasn’t stopped some so-called “experts” and advocacy organizations from trotting out “serious mental illness” to highlight their own political agendas.
All Mental Illness is Serious & Deserves Equal Access to Treatment
I’m sorry, but I don’t fall for these arbitrary distinctions that mean little in the real world. All mental illness — every disorder in the DSM-5 — is “serious” if it’s causing you significant distress and problems in your daily functioning. OCD? Serious. Binge eating? Serious. Depression due to the loss of a loved one? Yes, that too can be serious if it’s been going on for more than a year, and has significantly impaired your life and ability to function.
DJ Jaffe’s latest argument (writing over at the Huffington Post) — that the federal government is diverting millions of treatment dollars into education programs — is patently absurd and easily-proven false. Congress dictates how the public money is divided (mental health treatment, substance abuse treatment, substance abuse prevention) — not non-profit organizations. It’s right there in the law already — a law that Jaffe apparently hopes nobody reads. ((DJ Jaffe is anti-SAMHSA, so it’s no surprise that he supports HR 3717, the bill designed to gut much of SAMHSA and its work with mental illness in America.))
It’s not that we need to stop spending money on education and helping reduce the stigma of mental illness. We simply need more money to replace all of the funding slashed from mental health funding since the 1980s, starting with the Reagan administration. We need someone to bravely step up to the plate and hold states accountable who’ve slashed their own mental health treatment funding (which nearly all states have done in the past 5 years).
What we don’t need are arbitrary distinctions made about those with mental illness, dividing them up like so many cattle. Anyone who’s ever experienced it can tell you: all mental illness is serious business and can significantly impact a person’s life.
We need more mental health treatment funding across the board — not finger-pointing and Balkanization of our mental health advocacy efforts. Sadly HR 3717 does very little to increase funding to states for the treatment of mental illness. It does virtually nothing to increase psychiatric hospital beds in states — one of the primary points DJ Jaffe was making in the opening of his article of what’s needed. ((HR 3717 attempts to address one of the reasons there are so few psychiatric inpatient beds, but I believe largely misses the mark. It may help staunch the decrease in beds, but does little to actually fix the problem of too few beds to begin with.))
What’s not needed is scapegoating one set of patients at the expense of another. What’s not needed is cramming forced treatment laws down state’s throats — even if their own citizens don’t want them.
All people with mental illness should be treated equally — as individuals and citizens of these United States, who deserve and should have access to quality treatment, even if they are uninsured. ((And the right to refuse treatment if they are not a danger to themselves or others.))
Read JD Jaffe’s odd rant about the “nonprofit mental health industry” (whatever that is!): Is the Nonprofit Mental Health Industry Misleading Congress?
20 comments
Thank you for following me. I’m flattered. But I am not sure we disagree as much as you suggest:
I argue that the mental health industry has misled Congress to believe that all mental illness is serious, and you say I am wrong because “Congress dictates how the public money is divided”. I don’t think our arguments are mutually exclusive.
You correctly point out that for a mental illness to be serious it must have”resulted in serious functional impairment, which substantially interferes with or limits one or more major life activities†and then list ones like ADHD that have. Under the current definition of SMI, the disorders you list would be serious if they led to functional impairment. So the argument that we should focus on SMi would stand.
Where I think we wholly agree is in your footnote #2, which i hope you will expound on. “HR 3717 attempts to address one of the reasons there are so few psychiatric inpatient beds, but I believe largely misses the mark. It may help staunch the decrease in beds, but does little to actually fix the problem of too few beds to begin with” I think many in the mental health community would be interested in your take on why more beds are needed (persumably for the seriously ill?) . Patrick Kennedy wanted total elimination of IMD Exclusion, because it is discriminatory against people with serious mental ilness. Many in mental health movement do not want hospitals to be available and oppose ending the IMD Exclusion. I hope you write on that. Thanks again for following my work. I don’t think you allow links, but today’s Washington Post had a terrific editorial supporting HR 3717.
I’m arguing we shouldn’t focus on “serious mental illness,” which is 180 degrees from your argument. We shouldn’t use an arbitrary boundary setup for legal purposes of grantmaking and turn it into a policy-making grouping. We shouldn’t arbitrarily divide people into two groups and say, “Hey, you over there, your mental illness isn’t that important — good luck with it!”
Imagine if we were having this conversation about breast or pancreatic cancer. We wouldn’t. Policy-makers don’t look at specific types of cancer and devote more money to “serious” cancer — they devote more money to the populations most impacted (e.g., the cancers that affect the largest groups of people).
If that’s the way we worked on mental illness, we’d be devoting our largest swaths of money to people with anxiety and depression — the two biggest disorders that affect the most people in America. Yet I rarely hear anyone mention “anxiety” when talking about SMI, it’s always schizophrenia — a disorder that affects a tiny portion of the population.
So no, we are not at all on the same page and HR3717 is a huge step backward in more ways than it’s a step forward. The fact that parts of it are passing in other bills tells me already the whole thing is not going to pass, because there are simply far too many controversial provisions in it that have *nothing* to do with fixing the mental health system in America. Nothing.
I guess where we disagree is that I and many others believe the system already is bifurcated. The least seriously ill go to the head of the line and the most seriously ill go to jails shelters prisons and morgues. I think prioritizing the seriously ill would help even things out, and you fear it will rock the status quo. I don’t think it is so much that you oppose prioritizing one group over another as it is that you don’t see that that has already happened. Community programs only serve those well enough to volunteer. As Michael Biasotti, a police chief noted
“We have two mental health systems today, serving two mutually exclusive populations: Community programs serve those who seek and accept treatment. Those who refuse, or are too sick to seek treatment voluntarily, become a law enforcement responsibility. … [M]ental health officials seem unwilling to recognize or take responsibility for this second more symptomatic group.”
Others in law enforcement have noted this too. The mental health industry is oblivious to it.
As an epidemiologist, while we clearly consider the severity of a given outcome important, the prevalence/burden in the population is a huge deal. I too, am baffled by DJ Jaffe’s approach of trivializing what he perceives to be less important mental illness in order to gain more resources directed to the seriously mentally ill. He also seems to not understand that these so-called less serious illness have been increasingly linked with outcomes that are pretty universally considered serious, (e.g., chronic disease deaths http://jaha.ahajournals.org/content/2/2/e000068.abstract; low educational attainment http://www.ncbi.nlm.nih.gov/pubmed/12941366; high economic burden http://www.ncbi.nlm.nih.gov/pubmed/10453795 )
I think the message should that mental illness of ALL types should receive greater funding.
While I appreciate the discussion about HR3717, and agree that it does not go far enough to increase funding for the treatment of mental illness, it is a start, and I, for one, am ready to embrance change that appears to facilitate treatment for those with SMI. DJ Jaffe is absolutely correct about the fact that we need more beds across the country. What we also need is a reallocation of mental health costs so that funds are used to TREAT those with SMI. There is a profound difference in the ability to treat those with SMI who have insight into their illness, and those who don’t, and are therefore treatment resistant. Those who are cognitively impaired due to their SMI and lack insight into their illness (anosognosia) deserve additional attention through laws in order to afford them the treatment that is available and that could allow them to lead a happier, healthier lifestyle. I applaud Mr. Jaffe for his efforts to insure that those with SMI, who lack insight, have the ability to receive treatment, as others.
Ummmm, we already have plenty of laws in each state that dictate how you can force someone into treatment. They’ve worked pretty well for decades, and on balance, err on the side of granting people their Constitutionally–guaranteed freedoms. HR3717 seeks to take some of the freedoms away from ordinary Americans, not on the basis of being an imminent danger to themselves or others, but simply if they refuse treatment and a mental health professional + judge decide treatment is “necessary.”
To me, this is a step backward to the early- to mid-20th Century in this country, when anyone could be committed for virtually any reason. By putting it at the hands of judge, we’re supposed to feel like this is a safe alternative. But the judge rarely disagrees with the professional’s recommendation (94% of the time), making it a court-approved rubber-stamp process.
I am not sure what laws you are referring to that patients can be forced into treatment (LPS). In California that couldn’t be farther from the truth. My son under the age of 18 resided in a residential treatment facility and wasn’t allowed to even have shoelaces. When he turned 18 he was free to go, 10’s of thousands of dollars in legal fees he was deemed competent and do as he wished. He is now in prison for the better part of his life, he was a free adult less than 3 months before incarceration. It is nearly impossible to get an LPS conservatorship in Orange County.
I guess we really do disagree. You said, “We already have plenty of laws in each state that dictate how you can force someone into treatment. They’ve worked pretty well for decades, and on balance, err on the side of granting people their Constitutionally–guaranteed freedoms.” What you call ‘worked pretty well has resulted in 10X as many people being incarcerated for mental illness as hospitalized. It has resulted in 200K being homeless and others committing suicide. If that is ‘working pretty well’, I hate to see what a failed system would look like. Best
DJ Jaffe
Executive Director
Mental Illness Policy Org
A non-profit, non-partisan think-tank on serious mental illness, not “mental health”.
Yes, I thought you’d reply with some statistics, suggesting that the correlation of lack of AOT laws = why mentally ill people are being imprisoned. There’s scant proof that AOT will solve this problem, since the vast majority of those in prison and who have a mental disorder don’t have schizophrenia or bipolar disorder (the primary focus of AOT laws). It’s a straw-man argument. Have AOT laws in NY significantly reduced the mental illness problem in prisons? Not that I can find.
Unfortunately, I don’t agree that coercion is the solution to the problem of treating people with mental illness + criminality (usually substance-abuse related).
Remember folks, “AOT” is the shiny marketing term for court-ordered outpatient treatment. Let’s not forget what this really is — a lower standard of burden to commit someone to treatment. The only difference from the 1950s is instead of it being inpatient treatment, the court-order is now for outpatient treatment.
I thought when President Obama took over we would see an increase in funds to help people with mental illness. Apparently that has not happened.
The people with mental illness are some of the most vulnerable people in our society.
I always find it impossible reconcile Christianity with Conservative politics. (They like to think of themselves as partners)How do you tell someone “screw you, no insurance” and then pretend that you Christ’s second commandment to love your neighbor.
I’m an alcoholic (retired) and I never was in the kind of denial our political leadership is in. The rationalization between helping only people with SMI and not helping those without it is an atttempt to ease their own conscience.
People who are turned away from treatment wind up homeless, incarcerated or dead from suicide. Is this the solution? Anosognosia, or the lack of awareness that you have an illness, has been documented for close to 15 years in the DSM as the biggest predictor of non-adherence to treatment. People who are too sick to realize they’re sick should require treatment, not be left to get sicker and sicker while their brains get attacked by their illness to the point of irreversible disability. I was forced into treatment and I was restrained and I;m glad I was because if this didn’t happen I would be dead. You can’t convince me that ongoing psychosis is an acceptable lifestyle option for people with SMI. The commitment laws are a sham. I was lucky I got help: most people are turned away and left to get sicker and sicker. Families with loved ones who need help deserve better. HR 3717 is a step in the right direction.
You can choose to deny any medical treatment, even if it will save your life. People choose to forgo medical treatment every day — no court orders even life-saving medical treatment if an individual chooses not to have it.
Why should mental illness be any different, if it’s just another “brain disease” as so many people claim?
The only difference I can see is that one thing remains discriminated against, while the other thing isn’t. It’s discrimination to treat someone differently with mental illness than you would treat someone with a health concern, plain and simple.
Until there’s a proven test (psychological or laboratory, I don’t care) with high reliability that can correctly diagnose “anosognosia” (there isn’t one today), it’s just one person saying that another person has it. Anosognosia is something people with late-stage Alzheimer’s typically have that’s being repurposed, in my opinion, for use for anyone with a mental illness who isn’t getting the treatment that their family (or society) wants them to get (individual rights be damned).
Everything else is just rationalizations justifying one’s coercion.
Patients with Alzheimer aren’t turned away at the ER to be sent to a “Receiving Facility” not fit for a rabid dog. They don’t end up homeless, dead, or imprisoned and denied medical treatment or medications to stop their delusions and hallucinations. When imprisoned, medications are given when they need to stand trial and then executed. Prisons are for profit. I haven’t read of anyone with Alzheimer enduring that. Those who can seek treatment, as myself, can and do. Those in a psychotic state or episode, sufferring from delusions and hallucinations cannot seek treatment on their own. You and others would prefer myself as a parent to deny my child medical treatment at age 16, I would be an unfit mother. After age 18, I’ll do the same and my child wants me to, seek treatment to end the psychosis. I fully support H.R. 3717. Those that can help themselves will, those that can’t help themselves should be at the front of the line, same as the ER, emergency room. Not a step back in time at all. There is still more to do to repair our defunct HEALTH system.
I am disappointed that we are not acknowledging that those who have poor insight are not in the right state of mind to determine whether or not they need treatment. I believe that’s who DJ Jaffe is advocating for, legal separations between SMI aside. There IS a difference between someone suffering with ADHD and Schizophrenia! Not all disorders are equally debilitating. Come on! Any mental health professional knows this to be true. I could barely read Jaffe’s book, because it rings true with those of us who have seen it FIRST HAND. My aunt shot and murdered her own daughter during her first schizophrenic episode. She was unmedicated, and her illness was far more serious than my son’s ADHD, or my other son’s OCD, etc. You are lying to yourself and readers by saying there is no reason to classify disorders, or prioritize those who need services. My brother, also suffering with schizophrenia, received the treatment (not by choice) he needed before anyone was hurt (although he later told us he was seriously contemplating burning down a school and murdering all of us), and although he is medicated now, the medications are such powerful tranquilizers, that he is doing really well to take a shower, to do the very basic things that you and I take for granted. So no, not all disorders are equal. Those who are on permanent disability, like my brother, live on $800 a month!!! If we didn’t financially support him, guess where he would be. You know where; he would be on the streets or in prison! If you don’t personally know someone living in these circumstances, please just assume you know!
By putting brain disease and anosognosia in quotes, I’m assuming you don’t believe in either. So your argument should be for no funding for anyone rather than equal funding for all.
Anosognosia is real. I have watched a loved one deteriorate from teen years onward when others thought the person was just “lazy”…subsequently, a complete break from reality occurred and is more or less constant. When the individual takes medications, the relief is almost instantaneous…instead of living in constant fear and aimlessness there is purpose and kindness. Should the primary caretaker become unavailable, I do not know what will happen.
You can only choose to deny emergency treatment if you are able to give legal consent. That is, not under the influence, not having had a head injury or serious trauma, not being a minor, not being of diminished mental capacity….
I think being in a psychotic break and barely stabilized by heavy medications would qualify as non competent. What does it take to save someone from them self? Watching this happen now, I’m so scared.
Woke up to the news of a man who decapitated his mother and threw himself in front of a train. I wonder how many times he was granted his “guaranteed freedoms”, erring on the side of the Constitution? I think it’s safe to say he suffered greatly to be brought to that point, and how would an inpatient facility have been the worse choice? What freedoms? If a person cannot live with what is in their head, can’t stand their own thoughts and is driven to murder-suicide, how is that freedom?
The arguments aren’t usually that people with “serious mental illness” should be treated “better” than others. They are that this group should be coerced to take psychiatric drugs, no matter the amount of force needed, because the mental health system believes that their problems make them unreachable in other ways. Providers also believe it’s okay to take away someone’s liberty and imprison them in a hospital (witness the numerous Mental Health Acts that allow for forced hospitalization and drugging), without providing supportive relationships or any help working through their problems. Stabilization is simply warehousing and drugging until a person stops being disruptive or weird. The end result is not a human being who has grown or changed or healed. It’s a person under tight control who is out of the way and a bother to no one – and who probably has memories of violence, from the force used in the interventions.
I don’t consider this better treatment. I consider it more dehumanizing, treating a person like a broken machine or wild animal.
Using terms such as anosognosia and calling emotional problems a brain disease are just the ways that the “serious mentally ill” are put in a lesser category – a category where rights and basic human agency are taken away.
On the other hand, people without the SMI label are assumed to be able to heal with a range of help, including counseling, thus preserving human dignity and self-direction.
So don’t assume that the SMI get better treatment. They don’t. They are just subject to more bioreductionism of their problems, and the coercive hospitalizations and drugging that go along with that.
Better treatment would mean having more access to empathetic talk therapies, which are out of reach for many with MH problems, both the “SMI” and others. Relationships, attachment issues and working through trauma are key aspects of emotional health completely overlooked by the current paradigm. There is also so much wisdom that people can learn to genuinely ease their suffering and create richer lives. Everyone struggles in a society that is oppressive, hierarchical, and overly individualistic. And this doesn’t just apply to those diagnosed with MH problems, whether “SMI” or something else, but to all of us. We need conversation, communication, and mutual care. Not just throw a pill at it and forget the person. By putting some of us in the SMI camp, we deny the power of wisdom and love in helping us heal and transform our lives.
You agree that there is no distinction in the severity in the ways peoples lives are disrupted by mental illness versus serious mental illness. I’m sorry, but as a professional in the mental health field, for you to even suggest that some illnesses are not more severe (serious) than others shows a complete lack of understanding of such diseases as schizophrenia. Moreover, when people go to the emergency room, who gets treated first? The person bleeding profusely from a gun shot wound, or the person with a cough and headache? The more serious medical conditions get prioritized. Yet when it comes to mental illness, ‘mental wellness’ and milder forms of mental disorders are prioritized over the more serious brain diseases. Those who are the most ill are sent to the BACK of the line and told, “we’ll get to you shortly, if there are still any resources left.” And largely, when it comes their turn, there are no resources left. There aren’t enough psychiatric beds for those in crisis….because instead, the mental health care industry and SAMHSA grantees are prioritizing those with work related stress who need to learn mental relaxation techniques. Maybe the mental health care industry needs a course in triage!
Kimberly, I think you are misunderstanding the article. He doesn’t say every case of mental illness is equally debilitating. What he says is that all disorders CAN be highly debilitating and severely interfere with functioning, so only considering certain diagnoses “serious” and assuming all others can’t be serious is a fallacy.
Also, to use your analogy- don’t you think that its important to do things to make sure people don’t wind up in the “emergency room” in the first place? Contrary to what the marketing professional (eg, not a real mental health professional/researcher) DJ Jaffe tells you- there are things we can do on a population level to prevent or minimize mental illness. Not every single case can be prevented, but scientific literature DOES show it is often linked to preventable causes such as adverse childhood experiences (e.g., abuse and neglect). Anyone who is interested in helping out the “seriously” mentally ill should support programs that reduce these exposures in our society. Surely, you as a professional must recognize that.