Managing, or Failing to Manage, an Epidemic of Mental Illness
June 23, 2012 1:33 PM Subscribe
There is a critical shortage of acute mental health services throughout the nation that is making it increasingly difficult for people who don't meet standards for "imminent danger" to receive adequate care.
Barring a dramatic change in the systems that provide care, what alternatives are there for seriously mentally ill people? Incarceration has often become a form of care provision, but behavioral courts are an emerging alternative. (Previously.)
Outside of established legal and medical settings, there is increasingly a move toward dramatically democratized networks that rely on peer and community support. The Hearing Voices Network (previously) works in the UK and the US uses peer support to aid people who hear voices without confronting or challenging them. The organization was covered in The Sun [pdf alert] last year and in The New York Times five years ago. Legal scholar Elyn Saks wrote about her own experience of schizophrenia, noting that some of her most successful treatment came from practitioners who acknowledged the lived reality of her hallucinations.
The Icarus Project previously) is a self-described "radical" mental illness collective that is sometimes connected with the modern manifestations of the anti-psychiatry movement, such as the Freedom Center in Northampton, MA [pdf alert].
Finally, however, critic Thomas Szasz has levied criticism at both psychiatry and anti-psychiatry throughout his long career. In a system with few ideal alternatives, how will the field move forward?
Previously, Marcia Angell on psychiatric drugs.
Outside of established legal and medical settings, there is increasingly a move toward dramatically democratized networks that rely on peer and community support. The Hearing Voices Network (previously) works in the UK and the US uses peer support to aid people who hear voices without confronting or challenging them. The organization was covered in The Sun [pdf alert] last year and in The New York Times five years ago. Legal scholar Elyn Saks wrote about her own experience of schizophrenia, noting that some of her most successful treatment came from practitioners who acknowledged the lived reality of her hallucinations.
The Icarus Project previously) is a self-described "radical" mental illness collective that is sometimes connected with the modern manifestations of the anti-psychiatry movement, such as the Freedom Center in Northampton, MA [pdf alert].
Finally, however, critic Thomas Szasz has levied criticism at both psychiatry and anti-psychiatry throughout his long career. In a system with few ideal alternatives, how will the field move forward?
Previously, Marcia Angell on psychiatric drugs.
This post was deleted for the following reason: Poster's Request -- frimble
One of the problems with the way things are is that each time a mentally ill person cycles through the system, they get assessed and reassessed and reassessed over and over again, and they never get treated.
My son suffers from anxiety and depression, and every time he meets someone new he has to fill out another 10-page questionnaire and answer the same goddamned questions, which of course increases his anxiety and his belief in the pointlessness of it all and makes him not want to get treated. Because of course he's not getting treated, he's getting assessed, again. Even though he's signed no end of releases, and his medical records include a half-dozen similar questionnaires which the new clinician could read if they felt like it. And that's with private care, an advocate, and some stubbornness on his part.
It's a clusterfuck for sure, and easy to ignore because mentally ill people do not usually make very sweet and compelling subjects for commercials with celebrity voiceovers and 800 numbers scrolling across the bottom.
posted by headnsouth at 3:10 PM on June 23, 2012 [10 favorites]
During the three months in which my father cycled through the system, he racked up five emergency room visits, four arrests, four court appearances, three trips to PESS and too many police confrontations to remember. He spent 25 (nonconsecutive) days in a psychiatric hospital and 40 in a county jail. The medical expenses alone — not including the police hours, jail time or court costs — ran upward of $250,000. These were costly months indeed — to the institutions forced to deal with him and, in more ways than one, to our family.A cost of $250k and no treatment to speak of, just the administrative costs of cycling him in and out of the system. I can identify with this on a much smaller scale.
My son suffers from anxiety and depression, and every time he meets someone new he has to fill out another 10-page questionnaire and answer the same goddamned questions, which of course increases his anxiety and his belief in the pointlessness of it all and makes him not want to get treated. Because of course he's not getting treated, he's getting assessed, again. Even though he's signed no end of releases, and his medical records include a half-dozen similar questionnaires which the new clinician could read if they felt like it. And that's with private care, an advocate, and some stubbornness on his part.
It's a clusterfuck for sure, and easy to ignore because mentally ill people do not usually make very sweet and compelling subjects for commercials with celebrity voiceovers and 800 numbers scrolling across the bottom.
posted by headnsouth at 3:10 PM on June 23, 2012 [10 favorites]
According to a friend who works in the mental health field, there is also the vexing problem of many mentally ill patients committed to facilities who have no one at all to visit them and care for them. In NJ there is one not-for-profit secular organization which targets these people. These volunteers (some with diagnoses of their own, yet functional) set out weekly to reach out to the mentally ill, some in very poor conditions, and are welcomed mightily. Their documentary, "Crazy Enough to Care" is quite impressive.
posted by Seekerofsplendor at 3:20 PM on June 23, 2012 [3 favorites]
posted by Seekerofsplendor at 3:20 PM on June 23, 2012 [3 favorites]
Thanks for the article(s) and your work in putting them together.
posted by rmhsinc at 3:48 PM on June 23, 2012
posted by rmhsinc at 3:48 PM on June 23, 2012
One thing that is unexpressed is that these costs (more than 250,000 are cited in the New York Times article) are only created because of the current practice of admitting and treating all, regardless of whether or not they have the ability to pay or the desire to be treated.
People who are dangerous to others do need to be kept off of the streets, but I really have deep problems with our society's refusal to allow people to make their own choices. If people want to harm themselves, I think we should let them. If they harm others, then lock them away. But the idea that we need to save people from themselves for the rest of their lives, with varying degrees of success, strikes me as a foolish one.
posted by corb at 5:18 PM on June 23, 2012
People who are dangerous to others do need to be kept off of the streets, but I really have deep problems with our society's refusal to allow people to make their own choices. If people want to harm themselves, I think we should let them. If they harm others, then lock them away. But the idea that we need to save people from themselves for the rest of their lives, with varying degrees of success, strikes me as a foolish one.
posted by corb at 5:18 PM on June 23, 2012
People whose illness causes them to want to harm themselves today can be very happy to be alive tomorrow after receiving proper treatment.
posted by hydropsyche at 5:56 PM on June 23, 2012 [16 favorites]
posted by hydropsyche at 5:56 PM on June 23, 2012 [16 favorites]
I love the Icarus Project. I met some of the most brilliantly sane people I've ever known through the organization and its offshoots. They also had (I guess have; they're still there) one of my favoritest internet forums in the world.
I wish I'd kept in touch. I want to give so many hugs right now.
posted by byanyothername at 6:14 PM on June 23, 2012
I wish I'd kept in touch. I want to give so many hugs right now.
posted by byanyothername at 6:14 PM on June 23, 2012
Epidemic? Pandemic.
posted by oneswellfoop at 6:42 PM on June 23, 2012 [1 favorite]
posted by oneswellfoop at 6:42 PM on June 23, 2012 [1 favorite]
NAMI is another advocacy group, one which tends to be more aligned with community care centers and mainstream treatment.
Where I work, we have a 12 bed locked wing for a county of over 400,000. A lot of the mental health budget actually goes to pay for clients being kept at a private hospital in an adjacent county, and there have been several times severely decompensating clients have been routed through and out of the medical hospital (usually clients need to be medically cleared before going into a psychiatric ward) without ever being held. The whole situation is made messier where I am by recent laws which hold that the 72 hours of the hold don't apply until the person is in a psychiatric ward - meaning if there isn't a bed, they could be held indefinitely without any legal recourse.
In 2008, the local budget for community support was slashed. This resulted in a number of very good programs going under, from board and cares (board and cares are facilities where there is staff on site 24/7, food is provided, and medication is given prompted and as scheduled; they're expensive to maintain, difficult to staff, and often a very good alternative to a locked ward since they allow for more freedom), to intermediary supports where staff would be available 2-3 times a day and medications prompted but the clients were more independent. In the company I'm in, we went from having six or seven programs, including several board and cares, to having one program with eleven staff.
Clients who had been stable for years spiraled out of control, including one client of mine who I still worry about. Others were kicked out of board and cares to independent living with a minimum of support; in one case, the case manager wasn't on top of the finances, and a client had to live for a month on under 100$ in a situation where no food was provided.
Often simply a visit of an hour or two once a week can be enough to keep a client stable, or even improve their situation. It costs, yes; you can't hire someone out of high school to give skills training, therapy, and community support and expect it to work out. Knowledge about mental illnesses, the ability to assess for safety in the community, and the skills to teach and (in some cases) parent are critical for offering community support.
Honestly, though, I often wish knowledge about common but strange mental illnesses, like the schizophrenia I'm now so familiar with, was more generalized. My clients are actually more likely to be harmed by others, due to cognitive deficits and disconnection with a shared reality, than they are to harm others - and yet people still often treat them like they're one wrong word away from homicide. I hear so often that I have a "special place in [my] heart" or people can't believe I work with the clients I do, even from others in psychology. That isn't true.
My clients are people, like anyone, and benefit greatly from being included in society as equals, building relationships with others which aren't the paid relationship they have with me. They are also valuable, often quite fun and engaging, and can be incredibly loyal friends once you've shown yourself to be trustworthy.
Schizophrenia is a chronic illness in the US; it's acute in other cultures. One of the theories we have for the difference is that in our culture, people who behave strangely are ostracized and isolated away from "normal people" and so lose their connections with others which might mitigate some of their disconnection from a shared reality - because they aren't exposed to it. Personally, I say we should embrace the strange among us - you might find a lot more similarities than you think, and a valuable friend to boot.
posted by Deoridhe at 1:25 AM on June 24, 2012 [11 favorites]
Where I work, we have a 12 bed locked wing for a county of over 400,000. A lot of the mental health budget actually goes to pay for clients being kept at a private hospital in an adjacent county, and there have been several times severely decompensating clients have been routed through and out of the medical hospital (usually clients need to be medically cleared before going into a psychiatric ward) without ever being held. The whole situation is made messier where I am by recent laws which hold that the 72 hours of the hold don't apply until the person is in a psychiatric ward - meaning if there isn't a bed, they could be held indefinitely without any legal recourse.
In 2008, the local budget for community support was slashed. This resulted in a number of very good programs going under, from board and cares (board and cares are facilities where there is staff on site 24/7, food is provided, and medication is given prompted and as scheduled; they're expensive to maintain, difficult to staff, and often a very good alternative to a locked ward since they allow for more freedom), to intermediary supports where staff would be available 2-3 times a day and medications prompted but the clients were more independent. In the company I'm in, we went from having six or seven programs, including several board and cares, to having one program with eleven staff.
Clients who had been stable for years spiraled out of control, including one client of mine who I still worry about. Others were kicked out of board and cares to independent living with a minimum of support; in one case, the case manager wasn't on top of the finances, and a client had to live for a month on under 100$ in a situation where no food was provided.
Often simply a visit of an hour or two once a week can be enough to keep a client stable, or even improve their situation. It costs, yes; you can't hire someone out of high school to give skills training, therapy, and community support and expect it to work out. Knowledge about mental illnesses, the ability to assess for safety in the community, and the skills to teach and (in some cases) parent are critical for offering community support.
Honestly, though, I often wish knowledge about common but strange mental illnesses, like the schizophrenia I'm now so familiar with, was more generalized. My clients are actually more likely to be harmed by others, due to cognitive deficits and disconnection with a shared reality, than they are to harm others - and yet people still often treat them like they're one wrong word away from homicide. I hear so often that I have a "special place in [my] heart" or people can't believe I work with the clients I do, even from others in psychology. That isn't true.
My clients are people, like anyone, and benefit greatly from being included in society as equals, building relationships with others which aren't the paid relationship they have with me. They are also valuable, often quite fun and engaging, and can be incredibly loyal friends once you've shown yourself to be trustworthy.
Schizophrenia is a chronic illness in the US; it's acute in other cultures. One of the theories we have for the difference is that in our culture, people who behave strangely are ostracized and isolated away from "normal people" and so lose their connections with others which might mitigate some of their disconnection from a shared reality - because they aren't exposed to it. Personally, I say we should embrace the strange among us - you might find a lot more similarities than you think, and a valuable friend to boot.
posted by Deoridhe at 1:25 AM on June 24, 2012 [11 favorites]
One of the problems with the way things are is that each time a mentally ill person cycles through the system, they get assessed and reassessed and reassessed over and over again, and they never get treated.
This. I work in an emergency room, and people with mental health issues make up a much larger percentage of our patients than most people realize. Many people show up in the ED because they simply have no where else where they are guaranteed treatment. However, emergency rooms are spectacularly ill-equipped to deal with mental health problems. There is no psychiatrist on our staff; all psych evaluations are done by emergency medicine doctors and social worker consults. The treatment we can provide consists of medications that have some immediate efficacy like Haldol or Valium, physical restraints if the patient is actively a threat to themselves or others, and evaluation of any concurrent physical problems, like overdose, injuries, etc. Then we can either find them a bed in a psych facility-- which is very difficult to do, takes a long time, and is reserved for the extremely ill-- or discharge them home with instructions to follow up with a care provider elsewhere.
We can give them a list of low cost providers in the area, but most of those places have long waiting lists, and dealing with the bureaucracy and expense of the health care system is something many people with mental illness find very daunting if not impossible. If they are unable to get care outside on their own, they simply muddle along until the next acute episode necessitates immediate care. Then they come back to the ED. Hopefully on their own volition, but often after being detained by police for erratic behavior, violence, or drug/alcohol related incidents. There is a lot of concurrent substance abuse that goes on with the chronically mentally ill, because street drugs and booze are often more accessible than the medication and care they really need.
And then they cycle through our system again, getting what is essentially a band aid slapped on a hemorrhage. They get a brief assessment, and then another one, and then another one. They don't get actual treatment. They don't get medications for long term use, regular counseling, or assistance with their daily living, which they desperately need.
posted by bookish at 7:18 AM on June 24, 2012 [6 favorites]
This. I work in an emergency room, and people with mental health issues make up a much larger percentage of our patients than most people realize. Many people show up in the ED because they simply have no where else where they are guaranteed treatment. However, emergency rooms are spectacularly ill-equipped to deal with mental health problems. There is no psychiatrist on our staff; all psych evaluations are done by emergency medicine doctors and social worker consults. The treatment we can provide consists of medications that have some immediate efficacy like Haldol or Valium, physical restraints if the patient is actively a threat to themselves or others, and evaluation of any concurrent physical problems, like overdose, injuries, etc. Then we can either find them a bed in a psych facility-- which is very difficult to do, takes a long time, and is reserved for the extremely ill-- or discharge them home with instructions to follow up with a care provider elsewhere.
We can give them a list of low cost providers in the area, but most of those places have long waiting lists, and dealing with the bureaucracy and expense of the health care system is something many people with mental illness find very daunting if not impossible. If they are unable to get care outside on their own, they simply muddle along until the next acute episode necessitates immediate care. Then they come back to the ED. Hopefully on their own volition, but often after being detained by police for erratic behavior, violence, or drug/alcohol related incidents. There is a lot of concurrent substance abuse that goes on with the chronically mentally ill, because street drugs and booze are often more accessible than the medication and care they really need.
And then they cycle through our system again, getting what is essentially a band aid slapped on a hemorrhage. They get a brief assessment, and then another one, and then another one. They don't get actual treatment. They don't get medications for long term use, regular counseling, or assistance with their daily living, which they desperately need.
posted by bookish at 7:18 AM on June 24, 2012 [6 favorites]
People who are dangerous to others do need to be kept off of the streets, but I really have deep problems with our society's refusal to allow people to make their own choices. If people want to harm themselves, I think we should let them. If they harm others, then lock them away. But the idea that we need to save people from themselves for the rest of their lives, with varying degrees of success, strikes me as a foolish one.
How charmingly Darwinian of you. You do realize we are discussing here people who are incapably of making rational decisions? Many of whom could, with care, become rational again? If you starve yourself to death because you think the aliens have inserted mind control bots in your cornflakes, you are well beyond the point where the harm you are causing to yourself is truly voluntary.
In addition, if you'd read the first piece, you'd understand that the current system is basically the system you desire, where clearly insane people are allowed to wander the streets because they declare themselves unwilling to be treated. We got that now; it's why we have such an intractable homeless problem. If you prefer to pay the costs of this by paying for cops and jailers as opposed to shrinks and pills, then that's fine, I guess. But you're paying the costs either way. The people afflicted don't magically disappear down a rathole just because we leave them to fend for themselves.
posted by Diablevert at 9:08 AM on June 24, 2012 [11 favorites]
How charmingly Darwinian of you. You do realize we are discussing here people who are incapably of making rational decisions? Many of whom could, with care, become rational again? If you starve yourself to death because you think the aliens have inserted mind control bots in your cornflakes, you are well beyond the point where the harm you are causing to yourself is truly voluntary.
In addition, if you'd read the first piece, you'd understand that the current system is basically the system you desire, where clearly insane people are allowed to wander the streets because they declare themselves unwilling to be treated. We got that now; it's why we have such an intractable homeless problem. If you prefer to pay the costs of this by paying for cops and jailers as opposed to shrinks and pills, then that's fine, I guess. But you're paying the costs either way. The people afflicted don't magically disappear down a rathole just because we leave them to fend for themselves.
posted by Diablevert at 9:08 AM on June 24, 2012 [11 favorites]
I'm a few weeks into working at MindFreedom International as Communications Coordinator. We are an activist organization working to protecting human rights and transform the mental health system, including supporting this move toward peer and community support. Last month we helped organize a protest at the American Psychiatric Association conference in Philadelphia against the DSM-5 and the dominant position of the medical model for mental health. The Icarus Project was there too - solidarity!
And yes, we need to embrace the strange. Ultimately it will serve both people who are struggling with these things, and society at large, since these "individual" struggles are often a manifestation of problems in society. What about the people who say they don't want treatment? Often that's because the treatment they've gotten sucked. Fortunately, experience tells us that actively and non-coercively reaching out to them actually works quite well.
MindFreedom has just launched a new campaign - I Got Better - to research hope and recovery in mental health, and share stories and resources. We'll be creating some short videos of people telling their stories of dark times and then recovery, and using them inspires a lot of other people to record their own videos. Maybe we'll even get some celebrities to come out of the closet. If you'd like to help out with this, you can take part in our quick survey on hope in mental health.
Maybe I'll post when we have initial videos and/or when we have a good list of alternative resources available. This is my first time commenting on MeFi (can't believe it took me til now). Thanks all for making this such a great place.
posted by johnabbe at 10:43 AM on June 24, 2012 [1 favorite]
And yes, we need to embrace the strange. Ultimately it will serve both people who are struggling with these things, and society at large, since these "individual" struggles are often a manifestation of problems in society. What about the people who say they don't want treatment? Often that's because the treatment they've gotten sucked. Fortunately, experience tells us that actively and non-coercively reaching out to them actually works quite well.
MindFreedom has just launched a new campaign - I Got Better - to research hope and recovery in mental health, and share stories and resources. We'll be creating some short videos of people telling their stories of dark times and then recovery, and using them inspires a lot of other people to record their own videos. Maybe we'll even get some celebrities to come out of the closet. If you'd like to help out with this, you can take part in our quick survey on hope in mental health.
Maybe I'll post when we have initial videos and/or when we have a good list of alternative resources available. This is my first time commenting on MeFi (can't believe it took me til now). Thanks all for making this such a great place.
posted by johnabbe at 10:43 AM on June 24, 2012 [1 favorite]
It's pretty despicable. Several times throughout college I got bad enough to reach out to the student mental health services, and every time I became so frustrated that I just dropped the idea of getting help completely.
Even just deciding to get help is hard as fuck when you have depression. Then when you have to wait a month to see a counselor (who will likely be completely worthless) so he can give you a referral to a psychologist in another month (who will prescribe medication that has a high likelyhood of not working), it makes it real easy to rationalize staying in your room and doing drugs instead.
posted by WhitenoisE at 1:05 PM on June 24, 2012 [1 favorite]
Even just deciding to get help is hard as fuck when you have depression. Then when you have to wait a month to see a counselor (who will likely be completely worthless) so he can give you a referral to a psychologist in another month (who will prescribe medication that has a high likelyhood of not working), it makes it real easy to rationalize staying in your room and doing drugs instead.
posted by WhitenoisE at 1:05 PM on June 24, 2012 [1 favorite]
If people want to harm themselves, I think we should let them.
This is a stereotypical comment commonly made by those who have never had personal dealings with someone who has mental health issues. The hardest thing I've had to come to terms with is that reasoned logic does not hold much sway with the afflicted. Even in the face of incontrovertible evidence like photos, videos, or emails, a paranoid person will continue to believe their fabrications and delusions with absolute certainty.
Society seems to accept that people who do harmful things while drunk out of their minds (see: The Hangover, The Hangover Part II) do so because their minds are altered, but wouldn't have done so sober. Mental illness is basically the same, except affected persons cannot prevent their minds from being altered, nor are many even aware that their minds have been altered. It's not a personal choice -- it's more like being mind controlled.
posted by JVey at 2:23 PM on June 24, 2012 [4 favorites]
This is a stereotypical comment commonly made by those who have never had personal dealings with someone who has mental health issues. The hardest thing I've had to come to terms with is that reasoned logic does not hold much sway with the afflicted. Even in the face of incontrovertible evidence like photos, videos, or emails, a paranoid person will continue to believe their fabrications and delusions with absolute certainty.
Society seems to accept that people who do harmful things while drunk out of their minds (see: The Hangover, The Hangover Part II) do so because their minds are altered, but wouldn't have done so sober. Mental illness is basically the same, except affected persons cannot prevent their minds from being altered, nor are many even aware that their minds have been altered. It's not a personal choice -- it's more like being mind controlled.
posted by JVey at 2:23 PM on June 24, 2012 [4 favorites]
People whose illness causes them to want to harm themselves today can be very happy to be alive tomorrow after receiving proper treatment.
Not always. Not everyone recovers, even with treatment.
posted by talitha_kumi at 3:49 PM on June 24, 2012
Not always. Not everyone recovers, even with treatment.
posted by talitha_kumi at 3:49 PM on June 24, 2012
That is why I used the qualifier 'can'. And I dare say that millions of people come close to suicide but do not kill themselves and are very glad about that.
posted by hydropsyche at 7:03 PM on June 24, 2012
posted by hydropsyche at 7:03 PM on June 24, 2012
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These courts are a step in the right direction, but in order to be effective they require a funded and staffed community health organization. Unfortunately, since the mentally ill are not a very politically power demographic, this is a rarity. Most of the government programs that I have been involved with are struggling to just to have enough staff and supplies to medicate them.
I really like the hearing voices network. I may be a stupid white man, but it seems like most cultures had a way to deal with hallucinations and such that was more effective than the psychiatrical paradigm that has followed. I would rather value the alternative perspective and engage them in things where it would be useful instead of trying to drug it away and just hide them in some sort of assisted housing.
posted by psycho-alchemy at 2:40 PM on June 23, 2012 [2 favorites]