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DJ Jaffe

DJ Jaffe

Posted: January 19, 2010 02:41 PM

Doris Jones (pseudonym) of Scarsdale, NY (where I grew up) felt sad. Her husband left her, the kids were at college and she was feeling alone in her big house on three quarters of an acre. At the same time, Alejandro Morales, a 25-year-old man with schizophrenia, started becoming paranoid.

Free hotline services, support groups and counseling were instantly made available to Ms. Jones, but nothing was available for Alehandro Morales. As a result, he stabbed to death 9-year-old Anthony Maldonado.

Ms. Jones mental "health" needs trumped Alehandro Morales's mental "illness".

This is the result of an intentional, disastrous and massive migration in America away from treating the seriously mentally "ill" in favor of improving mental "health".

Mental "health" is defined "as a state of well-being in which every individual realizes his or her own potential, can cope with the normal stresses of life, can work productively and fruitfully, and is able to make a contribution to her or his community." Mental health services focus on making the worried-well less worried. There's plenty 'o funding for that.

On the other hand, mental illness is a biologically based no-fault medical problem that resides in the brain's chemistry or neuroanatomy. Untreated, it can lead to irrational thinking, and therefore irrational behavior. There are virtually no programs left for this group. According to a Treatment Advocacy Center study, in 1955 there were 340 public psychiatric beds available per 100,000 U.S. citizens. By 2005, the number plummeted to a staggering 17 beds per 100,000 persons.

The amount spent on mental health has exploded exponentially as every life experience is medicalized. On the side of increasing 'mental health' services at the expense of mental illness services are providers of mental health services, state mental health departments, the Center for Mental Health Services, the National Institute of Mental Health, the Mental Health Association, 501c3s galore, misguided advocates, a government funded consumertocracy, stewards of political correctness, and the medico-psycho-industrial complex.

Try this test. Google mental illness and Google mental health. Look how many results are returned.

Hardly anyone is still fighting for the mentally ill. In fact, it is no longer even considered politically correct to use the term "mental illness". One must say "mental health". You are not allowed to say "patients", you are supposed to say "consumers" as in "consumers of mental health services."

The people we see under 12 layers of smelly lice-infected clothing talking to themselves, fearing their hallucinations as they forage through garbage cans looking for food are not "consumers". They should be patients, but no one wants them. Oops. Was that politically incorrect? I don't care.

One organization that tries to bring attention to their plight, the Treatment Advocacy Center in Arlington, Va. is considered a pariah by some mental "health" organizations. They think the fact TAC addresses issues like hospital bed shortages, violence and incarceration by the untreated is stigmatizing to the treated.

That's like saying focusing on women who need mastectomies is stigmatizing to those opting for enlargement. Oops. I did it again.

Ethan Walters wrote about this mission creep in a thought-provoking article (even though I don't agree with it all) in the New York Times Magazine:

Westerners share...evolving beliefs about what type of life event is likely to make one psychologically traumatized, and we agree that venting emotions by talking is more healthy than stoic silence. We've come to agree that the human mind is rather fragile and that it is best to consider many emotional experiences and mental states as illnesses that require professional intervention. (The National Institute of Mental Health reports that a quarter of Americans have diagnosable mental illnesses each year.) The ideas we export often have at their heart a particularly American brand of hyperintrospection -- a penchant for "psychologizing" daily existence.

...(W)e are investing our great wealth in researching and treating mental illness -- medicalizing ever larger swaths of human experience -- because we have rather suddenly lost older belief systems that once gave meaning and context to mental suffering.

State Offices of Mental Health: It's not just NIMH that is avoiding the mentally ill, so are state departments of mental health. The NYS Office of Mental Health is led by Michael Hogan, PhD. (NYS used to have a requirement that the Commissioner of Mental Health be a medical doctor, but they have waived that so sociologists and other PhDs, can apply)

The important question for OMH to answer according to his statewide plan for mental 'health' services is

How do we create hope filled, humanized environments and relationships in which people can grow?

So much for helping people with serious mental illnesses and for the medical model. NYS OMH is now going to help people "grow". It's not just rhetoric. NYS is racing to kick people out of hospitals and Assisted Outpatient Treatment, two of the programs that actually helps the seriously ill. They have made electroconvulsive therapy, an important treatment, harder to get.

Pharmaceutical companies: Pharmaceutical companies run massive advertising campaigns designed to convince people they have a mental health issue that only their medicines can solve. So millions of people who have had their life experiences redefined as a medical issue are now taking the medications.

Perhaps the most absurd result of this is that it is making it more difficult for those who truly need the medications to get them. Insurers resist paying for them, since so many who don't need them take them. And now research is being done that shows some of these treatments are no more effective than placebos. Why? Because the people taking them in the first place didn't need them so naturally they didn't help. If these studies were done among the genuinely ill, the results would be much different.

Mental Health Services Providers: Because up to 50 percent of Americans have now been defined as having a diagnosable mental disorder, providers have more customers than they can handle. So what do they do? They pick and choose the easiest to treat. The ability to get care is now inversely related to need. Seriously ill need not apply.

Advocates: Advocates are running TV campaigns that say the "mentally ill are just like you and me". But they refuse to show the seriously mentally ill in their commercials. You won't see anyone standing on a street corner screaming, "I am the antichrist. Follow me". Ask anyone who has experience with schizophrenia. Are people with schizophrenia human and have the same needs as us? Yes. But would you define yourself as being like them? Not likely. They have a serious illness and need our help. But advocates have addressed their needs by ignoring and shunning them. Even advocates for the homeless, who know up to one-third of the homeless have serious mental illness, do PSAs showing most homelessness is the result of joblessness.

Consumers: Under the guise of empowerment, validation, recovery and opportunity, high-functioning ex-patients have been given massive funding by the Substance Abuse and Mental Health Services Agency, put in charge of peer programs, and given virtual black ball power over which state programs get funding. And the only ones they want funded are their own. A former deputy director of NAMI/NYS described the opposition to Kendra's Law, a law that allowed courts to commit the NYS Office of Mental Health to provide services to the seriously ill they preferred ignoring. According to NAMI/NYS:

(T)here is a movement to stop the law led by...a consortium of mental health rehab organizations that I cannot respect on this issue. These organizations do skills acquisition, not symptom management. To benefit from their programs, one must be stable and have insight into one's illness. Yet their leaders are foolish enough to plug their own programs as an alternative to AOT.

Their leaders tend to dismiss "the medical model" and adhere to a philosophy of self-determination. Unfortunately, for those who need AOT, this approach is something of a cruel joke. As Edgar Rivera (who lost his legs when he was pushed onto an oncoming subway by someone with schizophrenia) so eloquently put it in his testimony, those who need (what this law offers) don't need philosophy, they need help.



Andrea Peyser of the New York Daily News wrote a recent article exposing a board member of NYAPRS, the trade association for consumer cum providers in NYS. She documented how Steve Muccio intentionally caused someone with serious mental illness to become homeless. "I'm an advocate," he said.

Police and Criminal Justice: Tah Dah. They are the only ones advocating for the seriously mentally ill. Police and Sheriffs are the ones who are called in to provide the services mental health departments have decided not to provide the ill. The largest psychiatric hospital in New York is Riker's Island Prison. In California, it's the L.A. County Jail. The few advocates left who still care about the seriously mentally ill have been blessed that progressive criminal justice types are working to fill the void left by mental health advocates. Using the parens patraie powers of the state to help those who can't help themselves, the police will help the seriously mentally ill who are homeless and psychotic in ways the mental health system would never consider. They will pick these people up, bring them to the hospital, and sit with them -- often for hours -- until a doctor sees them. Unfortunately, at that point the mentally ill patients become part of the mental health system and are usually refused admission. Today, it's harder to get into Bellevue than Harvard.

We have to dismantle the mental health system and return the dollars to where the public wants them: helping the mentally ill.

(Note from DJ: A critical comment about NIMH was removed, because it was based on dated research. When I looked at more recent data, my comments were unfounded. The Director, Thomas Insel, has done a good job turning the Institute around).

 
 
 

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12:12 PM on 02/23/2010
As a woman who views mental illness from so many angles I am still in shock over the conversations that are pervasive and unending in our society. As long as our culture thinks in a linear fashion rather than in clusters, we will keep hearing the one key piano of motive rather than illness. Until we can define mental illness accurately we can not treat it or address it effectively. Pete Earley discusses this in his book "Crazy" as do I in "Lies In Silence". We must educate those in positions to change what has been a long time status quo. If it were one of their loved ones with a brain disease such as Alzheimers would they want a lethal injection instead of treatment? Advocate on. It is one of our best tools. - SJ Hart
12:30 PM on 02/06/2010
As mentioned by MaryBlueSky, caregivers are so overwhelmed by caring for seriously ill family members that it is difficult to summon the energy for advocacy activities. I am the parent of a 12-year old diagnosed with Bipolar-I and Asperger's. He had manic behavioral episodes from the time that he was about 5 years old, but suicidal depression did not appear until he was about 7 years old. That is also the time when visual and auditory hallucinations began. Chaotic is the adjective that I would use to describe our household, since he has never been completely stable. My wife and I get very little respite and it takes much of our energy to just keep going as a family. It was actually a relief when a psychiatrist at a residential treatment center, where our son stayed for 7 weeks this past summer, said "awakenings are rare and our goal is to achieve the greatest amount of stability possible". That, at least, removed feelings of guilt and frustration about not doing enough.

I have mixed feelings about your article. I agree with most of what you write, but feel that while advocacy organzations for the mentally ill have existed for many years, they have not accomplished as much as they might have by better cooperation.
07:29 PM on 02/06/2010
Continuing from above:
The ACLU and National Alliance on Mentally Illness (NAMI) are both opposed to capital punishment for the mentally ill, but I their opposing positions on the question of compulsory hospitalization for the severly mentally ill have interfered with cooperation between the two groups. The Treatment Advocacy Center and those behind the Bring Change 2 Mind campaign appear to be somewhat at odds over whether it's better to portray the mentally ill as part of the continuum of society or potentially dangerous people. And, people like Michael Nye with his biographical and photographic coverage of the mentally ill in his "Fine Line" documentary seem to have been left outside of the discussion altogether. Surely there are areas of agreement among the members of these organizations, where cooperation for the benefit of the mentally ill can be achieved. Even though I disagree with the ACLU's opposition to compulsory hospitalization, my guess is that those who agree with the ACLU's position really think they are right. And, while I agree with the Treatment Advocacy Center that societal acceptance should not be the primary goal of advocacy for the severly and chronically mentally ill, I do think it is a worthy goal for the less severly ill and those who are more stable as a result of treatment. We need to work together.
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DJ Jaffe
Founder, Mental Illness Policy Org.
08:45 PM on 02/20/2010
Organizations do work together on certain issues and disagree on others. Healthcare reform is the one that comes to mind where they work together.
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vim876
06:29 PM on 01/20/2010
First, forced treatment of people with mental illness is an extremely complex issue. Mentally ill adults are still adults, and should be an imminent risk of harm before they lose their basic rights. As someone with 'mental illness' that almost killed me a number of times, I'd like to know that my autonomy is only going to be violated if someone (me) is in imminent danger and refusing to comply with treatment regimens. Which brings me to the next point: treatment can have side effects that would make those without mental illness reject it. I had ECT. It may have saved my life, but I lost the memories from four years of my life, and it affected my ability to form new ones. Glad as I am that I'm still here, I would not advocate for forced treatment with ECT. Ever.

Second, I find it likely that the deinstitutionalization of mental patients beginning in the 1980s is part of the cause of the deemphasis of mental illness.
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18
07:21 PM on 01/20/2010
I am very sensitive to your situation. I commend you for your ability to stay strong and live independently. I only wish that were the case for my brother.I think that each person needs to be evaluated to determine their needs. Just by posting the comment you did it is obvious to me that you are much more capable than my brother ever was.

There have to be extreme reasons why a person would be placed in a facility where there movements would be restricted, as you stated; their safety and the safety of others is the most important criteria. I hated every minute my brother was hospitalized and I was in fear every minute after his release. I think we have to find that fine line, which is difficult.

The Treatment Advocacy Center is aware of your concerns as well and that is why laws like Kendra's Law are so important. This allows the person to remain independent, but also ensures the person follows a treatment plan in order to stay healthy.
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DJ Jaffe
Founder, Mental Illness Policy Org.
08:07 PM on 01/20/2010
Thank you for your open and honest post. It is arguable as to whether harm to self should be imminent before government intervenes or whether they should intervene at all. (Should suicide be legal?). Someone's position on this may vary if the person is 'exercising their free will' or has an illness that prevents it. (If someone thinks they can fly, should they be allowed to jump off a bridge?)

But where the argument is more clear in my mind is what happens when someone is dangerous to others. Should the threshold be imminence or should we be able to head 'em off at the pass.

While the issues are complex, that doesn't mean we shouldn't try to address them. The NAMI policy on Involuntary and Court Ordered Treatment I believe makes a good well balanced approach.
http://www.nami.org/Content/ContentGroups/Policy/Updates/Involuntary_Commitment_And_Court-Ordered_Treatment.htm
Now we have to implement it.
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MerrieWay
04:37 AM on 01/20/2010
This is so unnerving, so sad, and unacceptable; I want to scream from the rooftops...."Help those suffering. There goes I, my beloved,my neighbor, my friend. “When Regan closed hospitals that served the mentally ill, it was a travesty. Not one administration since has rectified the matter. No excuses, its blatant dismissal of people in need.
The Pharma's influence on the nation at large has created a legalized drug cartel. They've convinced people to handle a tad of anxiety or to feel stress free that drugs are the panacea. There is so much to learn about the brain and what markers might be discovered that would help the most chronic mentally ill. Research is the key: Not just Pharma research, for the next hot drug.
DJ thank you for your insight, facts, and tireless effort.
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DJ Jaffe
Founder, Mental Illness Policy Org.
09:03 AM on 01/20/2010
Thanks for kind comments. After you scream from rooftops, please support treatmentadvocacycenter.org , they are one of the the few orgs really working and trying to do something about this. Thanks again.
09:53 PM on 01/19/2010
"mental illness is a biologically based no-fault medical problem that resides in the brain's chemistry or neuroanatomy." This is stated as fact in your article, when it is opion. Are you certain this is so? What about serious mental illness caused by comsuming illicit drug? Or over indulgence in alcohlol? No fault?
Are you sure it is a medical problem? Not a socialogical one, labeling certain behaviours as serious mental disorders because the behaviour is abhorent to that particular group?
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DJ Jaffe
Founder, Mental Illness Policy Org.
11:37 PM on 01/19/2010
I think your comment about 'labeling certain behaviors as serious mental disorders because the behavior is abhorrent to (a) particular group' is interesting. I don't think the disorders that are abhorent are usually labled "serious". Which is the whole point of my article. They may have to do more with mental health than mental illness. I am well aware that the APA has formerly labeled "homosexuality" as a 'disorder'. Likewise, the current DSM includes a lot of nonsense. But I do think the point of my article is valid. Thanks for your comment
01:55 PM on 01/20/2010
Mental illness is most definitely a no fault illness. Many people who consume illicit drugs and abuse alcohol have undiagnosed mental illnesses that they are trying to medicate. The mental illness, or a predisposition to it, were present before the substance abuse. In my case, no substance abuse was involved. I was a forty year old nurse and mother with a great husband and family when I was hit headon by bipolar depression. I come from a priviledged and abuse-free backround, am well educated, and have everything to live for. And yet, the combination of stress and a genetic predispositon(there is a lot of mental illness in my family) made me have a psychotic break and I was diagnosed as bipolar. Where is my fault? Mental illness is not a spiritual or sociological problem. It is an illness of the organ we call the brain. And luckily it is treatable. I have been well for 8 years thanks to medication and psychotherapy. If you were to meet me you would have no idea that I am bipolar. I easily "pass" for normal. Unfortunately, not everyone is as fortunate as I have been. There is a lot of ignorance and fear about mental illness. But I'm hopeful that information and education of the public can change that. My thanks to D.J., and people like him, who have the courage to speak honestly about mental illness issues.
09:42 PM on 01/19/2010
I've had mental illness or what I call a psychiatric condition for 42 years.

How one group of survivors/consumers got in such control over the service delivery and choice of services has seemed unfair. I set up support meetings for people who have long term/life time psychiatric conditions.

People with mental illness seem to want to know what is mental illness and how to live with our condition.

In the end, the current war will bring in so many psychiatric casualties that America will be forced to look at mental illness and the mentally ill. I hope that building these ongoing educational support meetings will make our life better and our suffering less. I was never cured. Through ongoing educational support meetings which I both set up and attend, I do a half way good job of navigating through the world without completely falling apart.

Keeping myself and other Sane, Stable, Safe and Sober is hard work. I can not seem to find people who want to do that work. Most of the people with psychiatric conditions seem to need more information, knowledge, mentoring and time learning about mental illness and the helpful programs.

What I never seem to get is authentic interest in people with mental illness who need some educational time, lots of care and attention. Sometimes it seems like everybody wants to be a big shot and very few people want to spend quality time with us.
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DJ Jaffe
Founder, Mental Illness Policy Org.
11:51 PM on 01/19/2010
This is important and profound. Thanks for posting:
What I never seem to get is authentic interest in people with mental illness who need some educational time, lots of care and attention. Sometimes it seems like everybody wants to be a big shot and very few people want to spend quality time with us.
04:45 PM on 01/18/2010
After losing a beloved son to serious mental illness, following a ten year struggle--both his and our family's--I've been fighting for treatment for truly mentally ill folks for ywenty-five years. It takes enormous effort not to become jaded, cynical, exhausted, and chronically angry, since the lack of treatment endures through Republican and Drmocrat administrations at both the state and national leved. The faces changes, but the policies don't. At this stage of the game, I don't know what it will take to create or force a refocusing to take care of those most in need. It's like so much else--we can save Wall Street but not Main Street; bankers and brokers but not plumbers and secretaries. I can't think of a single politican I can respect anymore--they are all beholden to their deep-pocketed contributor-friends.
03:43 PM on 01/18/2010
People with mental illness receive treatment too frequently in our jails and prisons because they are too ill to "line up" for mental "health" services. They get crowded out of line by the worried well. Now, that line includes those discouraged about economics and lack of insurance. See: http://www.latimes.com/features/health/la-he-myturn-jeff18-2010jan18,0,6320275.story

In a triage situation---as public budget streams are in---services must first go to the most severely ill and disabled.
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DJ Jaffe
Founder, Mental Illness Policy Org.
11:42 PM on 01/19/2010
I agree "In a triage situation---as public budget streams are in---services must first go to the most severely ill and disabled.". What is interesting to me is that I have never heard this debated. A case could be made that services (dollars) should go where they will do the most 'good', i.e, turning system users into taxpayers. If that argument prevails, then one could argue that services should go to the least ill, not the most.
And in fact, that is what has happened. It just hasn't been debated.
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09:35 AM on 01/18/2010
I tell people that by releasing the sickest of the sick from the state hospitals - people like my brother Paul, who no drug or behavioral therapy could reach and who was made totally incompetent due to his illness - they essentially threw the baby out with the bath water.

Yes, the state hospitals had problems, to say the least, but now no long-term care is available for people like my brother at all. Nothing.

No nursing home will take someone who is made so incompetent from their mental illness that they cannot manage to live on their own, unless they have an ADDITIONAL illness in a different organ of their body that ALSO qualifies them for long-term care. This is what happened to my brother. He spent over 20 years in the state hospital system until it closed down around him. After that, he had been cycling in and out of local hospital psych wards, short stays back at the state hospital and then back to "assisted" living apartments or adult homes for 8 years, until his lungs got so bad the nursing home accepted him.

This is federally sanctioned discrimination. When Medicaid was created in the 1960's an obscure provision prevented coverage for patients in "Institutes of Mental Disease" or IMDs. It is called the IMD Exclusion and should be unconstitutional for it's discriminatory practices. Please contact your US Representative and urge them to include the repeal of this discriminatory practice in the health care reform legislation.
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vim876
06:31 PM on 01/20/2010
How is that affected by the Mental Health Parity act?
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07:08 PM on 01/20/2010
The parity legislation passed under the Bush Administration did not repeal the IMD Exclusion. The spin I hear is that the health care reform bill will strengthen the existing parity laws, but I have not heard that it would go all the way to repeal the IMD Exclusion.

Please contact your representatives to urge them to ensure it is repealed.

I believe it is not only discriminatory, it is tantamount to denying care, which is medical negligence, because there are no beds for people like my brother. None.
05:41 AM on 01/18/2010
Thank you for this article. The destructive policies you expose are shameful. We have abandoned the seriously ill to that our pharmaceutical industry can profit from the worried well. No one will speak for the seriously mentally ill: their families have either given up or are completely overwhelmed by their care... and until they commit a crime they get no care. This is a major failure of our society.
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DJ Jaffe
Founder, Mental Illness Policy Org.
11:45 PM on 01/19/2010
As Rael Jean Isaac said in perhaps the most important book on mental illness policy ("Madness in the Streets"), "The family has become the institution. But it is an institution without training, without resources, without support, and without the ability to enforce compliance".
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LadyXoc
03:16 AM on 01/18/2010
Amen. Amen. Amen.