DJ Jaffe and the Treatment Advocacy Center

spiritual_emergency · Mar 06, 2010 at 09:03 PM

I've noted previously that I tend to be active in a number of online environments and prefer to go where the conversations take me. More recently, I've been active on facebook where I encountered an individual known as DJ Jaffe who posted the following:

Quote:

I blog on Mental Illness at Huffington Post. Please read my latest post "Mental Health kills the Mentally ill" and share widely. Thank you. http://www.huffingtonpost.com/dj-jaffe/ ... 26672.html

My curiosity tweaked, I clicked on the link...

Quote:

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.

On the one hand, I felt that some of Mr. Jaffe's statements were ill-founded; on the other, I know it can be difficult to find suitable care for people who are in crisis states. I continued reading...

Quote:

... 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.

I wasn't sure what to make of Mr. Jaffe. He presented himself as an advocate of the mentally ill but his article contained such a mish-mash of half-truths mixed with speculation. I went looking for some information and found this article...

Quote:

... They have described Mr. Jaffe as an ill-informed zealot and much worse.

But he is an anomaly in the tight-knit advocacy community for more reasons than just his stand on the bill. He is not a psychiatrist or psychologist. He has never run a clinic or program that treats the mentally ill. He is, in fact, an advertising executive at Foote, Cone & Belding in New York, which handles clients like Chase Manhattan Bank.

And his only connection to mental illness came more than 20 years ago, through his sister-in-law, who moved in with Mr. Jaffe and his wife, Rose, in Manhattan when the sister-in-law was a troubled teen-ager. Before long, she was catatonic...

Source: New York Times

That didn't tell me much.

spiritual_emergency · Mar 06, 2010 at 09:39 PM

A few days later, Mr. Jaffe posted a link to another article he'd written. I was surprised to note that this one was posted at a site that contained this banner: FAMILY SECURITY MATTERS: Engaging American Families in our Nation's Security. I wondered, 'Since when was schizophrenia a matter of national security?' and then began to read through the article...

Quote:

Exclusive: Save Lives – Changes to Involuntary Commitment Laws Needed - DJ Jaffe

This week:
•A Wilkinsburg, Pennsylvania woman who sliced the baby from the wombof a teenager and then killed the mother was found guilty but mentally ill.
•In Bloomington Illinois, a man accused of fatally bludgeoning his 14-month-old daughter with a baseball bat was determined to be mentally unfit to stand trial.
•In St. Paul, Minnesota, a grocery store worker was randomly stabbed by someone with schizophrenia. He told police he chose his victim because he was male.

While most mentally ill individuals are not violent, those who have very serious illnesses and are not receiving treatment are more violent as a group than the general population.

Their victims are most often themselves (5,000 a year kill themselves). The second most likely victims are family members. According to a 1994 Department of Justice, Bureau of Justice Statistics Special Report – "Murder in Families" – of parents killed by children, 25.1 percent of defendants had a history of untreated mental illness

Currently the law in many states prevents inpatient commitment until after the person with mental illness becomes “danger to self or others.” That’s absurd. Laws should help prevent violence, not require it.

The effort to change laws is being led, not surprisingly, by those who care more about the mentally ill than public safety: the parents and families of the ill. For them, reform of involuntary treatment laws can help their loved ones survive safely, lead semi-normal lives, and avoid the homelessness, incarceration, and victimization that pervade the lives of many with untreated, serious mental illness.

However, the parents have made little headway. The fact is, no one wants to reform laws to help the mentally ill other than their families. It’s hard to get up a head of sympathy for people living under seven layers of lice-infected clothing and eating out of dumpsters on the city streets.

But more recently, stories like the woman who sliced a baby from the womb, the father who bludgeoned his 14-month-old daughter, and the clerk who was randomly stabbed have brought new advocates to the party: those concerned about public safety...

Source: The Aforementioned National Security Site

I was curious about that 5000 people figure so I clicked on that link too. It lead to a page from the Treatment Advocacy Center -- pay careful attention to the wording...

Quote:

The only major study of psychosis and suicide was done in St. Louis, 1956–1957. During one year, 134 individuals committed suicide, and 19 percent of them had symptoms of psychosis (mostly delusions) in the month preceding their suicide...

If that percentage, admittedly conservative, was true in 1999, then 19 percent of the 29,199 completed suicides, or 5,548 individuals who committed suicide in 1999, were psychotic at the time they committed suicide.

The conclusions reached by both sets of analysis are thus consistent:
At least 5,000 individuals who commit suicide each year are psychotic at the time of their suicide.

Source: TAC: Suicide

There are so many problems with that statement I don't even know where to begin. To start with, there are certainly more current studies related to mental illness and suicide (I'll post some of those in a minute).

Secondly, the data was arrived at by speculation -- If that percentage, admittedly conservative, was true in 1999...

Third, did anyone else happen to catch that in the initial article Jaffe stated that 5000 of the "mentally ill" kill themselves. The implication is that he's drawn his data from a pool that includes all known classes of mental illness -- depression, Apserger's, anxiety disorders, etc. However, by the time we get to his source, those "5000 suicides" have all become the territory of the "psychotic".

I noted then that I wasn't feeling the love and had begun to seriously doubt any claims to advocacy.

spiritual_emergency · 11:12 PM

The information I'm aware of as related to suicide and schizophrenia. This data is from 2005 and there may well be more current information out there. These are the facts as I know them to be, without speculation. Note that the rate is higher among young men who are most vulnerable in the period immediately following their initial treatment and diagnosis.

Quote:

Results
Twenty-nine cohorts observed schizophrenics from date of admission or illness onset, and another 32 were composed of any type of patient. The studies were as small as a few tens of patients, to over 9,000. Most involved several hundred patients, followed up for two to 22 years.

For those studies that examined patients from first admission or new onset (22,598 patients), the case fatality estimate (percentage of original sample who died by suicide) was 2.9% (95% CI 4.3 to 5.6%). Of all deaths, 31% were deaths by suicide. Among studies using mixed samples (25,578 patients), the case fatality estimate was 2.3% (1.5 to 3.5%) and 6% of all deaths was by suicide.

Analysis according to time of follow up suggested that suicide risk was greater sooner rather than later after diagnosis or onset. The estimate of lifetime suicide prevalence in those observed from first admission or illness onset was 5.6% (95% confidence interval, 3.7% to 8.5%). Mixed samples showed a rate of 1.8% (95%CI, 1.4% to 2.3%). Case fatality rates showed no significant differences when studies of patients diagnosed with the use of newer criteria were compared with studies of patients diagnosed under older criteria. ...

About 1 in 20 schizophrenics will commit suicide during their lifetimes, more often near illness onset. The findings of the meta-analysis do seem to be borne out by other studies published since the meta-analysis was completed. For instance, there were 78 completed suicides in 4237 acute inpatients with schizophrenia admitted between 1985 and 2000 in Taiwan. That is a rate of 2%, and half of the suicides occurred within four years of first admission, but Taiwan may well have lower rates of some important risk factors, particularly drug misuse. Rates of suicide in mainland China in the late 1990s averaged 0.7% of the schizophrenic population annually (28,737 suicides in people with schizophrenia out of 4.25 million people with schizophrenia in China). If half of the suicides were in the first few years, that would equate to a lifetime risk of almost 6%. These two large studies in east Asia confirm the overall estimate of between 2% and 5% lifetime risk of death by suicide.

Source: Bandolier: Suicide and Schizophrenia (This article is no longer available online)

==========================================================

Schizophrenia's Suicide Risk May Be Less Than Thought
Aaron Levin

A new meta-analysis estimates that 5.6 percent of people with schizophrenia will commit suicide—half the rate usually reported in the psychiatric literature.

The lifetime risk of suicide among persons diagnosed with schizophrenia is about half of the rate routinely quoted in the psychiatric literature, according to a meta-analysis of 61 studies.

Rather than the conventional estimate that 10 percent of those with schizophrenia will die by suicide, the new study estimates that 5.6 percent will commit suicide during their lifetime, with most deaths occurring shortly after the onset of illness...

The previous estimate was based on the number of suicides listed as the cause of death among the total number of people with schizophrenia who died during the course of follow-up, reported the researchers in the March Archives of General Psychiatry. That simply gave the proportionate mortality—the percentage of dead people who had schizophrenia and died by suicide. Such an approach works only when all subjects are observed until they die—a practical impossibility—or if suicides as a proportion of all deaths occur at the same rate over time, which they do not. Most suicides among persons with schizophrenia occur in the first few years following diagnosis.

"Proportionate mortality provides information only about the dead," they said. "The direct use of proportionate mortality rates... assumes a constant rate of suicide over a lifetime and will therefore overestimate suicide risk."

Using the proportionate mortality method among new-onset cases resulted in a suicide rate of 30.6 percent, a "dramatic" overweighting of lifetime risk. A more meaningful number would be the case fatality rate, the percentage of the total sample who killed themselves, according to the researchers. ...

While using a statistical sword to cut the expected suicide rate in half may seem like an important accomplishment, a 5 percent rate still represents a major risk, said Carol A. Tamminga, M.D., a professor of psychiatry at Texas Southwestern Medical Center in Dallas. She added that epidemiological studies like this deserve attention.

"These new methodologies are needed because the use of suicide rates was not truly scientific before," she said. "Sometimes people used the 10-percent figure to simply underscore the importance of the issue."

Source: Psychiatric News April 15, 2005

spiritual_emergency · Mar 06, 2010 at 10:21 PM

Meantime, Mr. Jaffe continued to share his articles through facebook and the Huffington Post...

Quote:

Obama's failure to provide parity for mentally ill

... So if you're a state director of mental health, and DC says to you, "We won't pay for patients in hospitals", what would you do? The states do the same thing. They kick the patient's out of hospitals so they can 'return' to the community. Why? Because then Medicaid will pick up 50% of the cost of their care.

llene Wells had a brother, Paul who was killed by this policy...

Source: http://www.huffingtonpost.com/dj-jaffe/mental-health-parity-obam_b_443714.html

The immediate impression you're given is that Ms. Wells brother died because he was kicked out of a state hospital. However, if you click through to Ms. Well's blog and read her account of events, you discover that Paul died from lung cancer. He was living in a nursing home at the time and had received appropriate cancer treatments. Ms. Wells does not specify if his ongoing care and treatment was paid for by family members or state/federal funding.

Ms. Well's criticism seems to be that Paul was transferred to facilities that offered less supervision than that offered in state hospitals. She seems to feel her brother would have benefitted most in an environment of high supervision, expressing concern at one point for a time-frame when he was living independantly and not eating adequately. She questioned how officials could say on the one hand that Paul was so ill he would never recover and on the other, set him up in an independent living situation.

Meantime, if you also click on the link Mr. Jaffe provided for information on the Institutes for Mental Disease Exclusion (IMD) it leads to another article Mr. Jaffe wrote back in 1999 in which, once more, he singles out schizophrenics as a particularly menacing force in society...

Quote:

Not only does federal discrimination hurt the mentally ill, it affects the standard of living for everyone else, too. Many parks and public libraries, once enjoyed by all, are now rendered nearly unusable to the general community by the visions of lost, psychotic souls who need inpatient care but are locked out by the discrimination embedded in Medicaid law. Seemingly random acts of violence committed by individuals with a history of mental illness are frequently reported on the evening news. No amount of preaching by the Surgeon General against "stigma" will overcome the acts of a Russell Weston, a Ted Kaczynski or an Andrew Goldstein, all persons with untreated schizophrenia.

Source: http://www.treatmentadvocacycenter.org/index.php?option=com_content&task=view&id=575&Itemid=196

If you're looking for some background information on the IMD Exclusion that is less sensationalistic and biased, these links might serve to provide a more balanced background:

NAMI: Grading the States - Recommendations

Psychiatry Online: APA Discusses Health Reform With Obama Administration

spiritual_emergency · 11:06 PM

Admittedly, by this time I'd read the following article and I couldn't help but believe it because it verified my own experience...

Quote:

D.J. Jaffe and E. Fuller Torrey and other members of TAC (Treatment Advocacy Center) will make up data, lie, and do everything possible to further their dangerous agenda of force and coercion. They ignore the facts as they and other NAMI fanatics pursue their cause to strip away basic human rights. They manipulate the public with op-ed articles that indulge in worst-case-scenario fear mongering. It just doesn't make sense to create public policy based on rare extreme incidents yet that is exactly what these zealots clammor to support.

It's been over ten years since E. Fuller Torrey attacked Jay Mahler and the entire consumer/survivor movement. (Psychiatric Services, Feb. 1997, (click here for article) Torrey publicly (in that article) admits that he makes up data in his head to support his positions. His credibility and hence, TAC's credibility must therefore be, at best, suspect. Any claims made by them must be considered mere fabrication until proven otherwise.

WORST CASE SCENARIO FEAR MONGERING
D.J. Jaffe, a co-founder and Board Member of TAC, sensationalizes horrible news op ed pieces by giving attackers names like 'Dragon' and 'Second Avenue Slasher'. He uses a page out of his strategy to push Kendra's Law in 2000 when he said, "From a marketing perspective, it may be necessary to capitalize on the fear of violence to get the law passed." (click here for article)

D.J. Jaffe is most infamous for his "Turn over the furniture" tip where he suggests that family members "lie" by turning over the furniture so that police will assume the person they want to involuntarily commit is dangerous. (click here for article)

E. Fuller Torrey, MD has crossed the United States, appearing in print and on television, purposely distorting facts and wrongfully portraying persons with mental illnesses as violent predators. His actions, and those of the Treatment Advocacy Center (TAC) which he heads, are causing serious harm to tens of millions of persons labeled with mental illnesses. Deliberately inciting the American public into fear (and ignorance), including employers, landlords, neighbors, community leaders, and legislators, TAC is making it increasingly difficult for persons labeled with mental illnesses to live as they want to - happily and peacefully in their communities. The Treatment Advocacy Center's Torrey-led crusade to forcibly treat and medicate consumers is not just increasing, but causing, stigma and discrimination. In order to push their involuntary commitment agenda, TAC is sensationalizing rare and tragic incidents and then lying about the prevalence and frequency of these tragedies...

Source: Let Freedom Ring

spiritual_emergency · Mar 06, 2010 at 10:39 PM

Over at facebook, Mr. Jaffe had started a new group to promote Kendra's Law. I hadn't know much about it initially but I joined the group so I could find out more. I discovered that the premise of Kendra's Law is rooted in the assumption that people who are mentally ill are too ill to know as much and for this reason, society should put laws into place that will allow them to be treated by force.

I became quite disenchanted with the group when Mr. Jaffe (or his chosen moderators) removed some of my posts as related to the truth about Andrew Goldstein, the young man who had pushed Kendra Webdale to her death in a subway station. What follows are some of the links I had posted to that discussion which were promptly removed...

Quote:

"Your reporting is incomplete. Andrew Goldstein, who actively sought treatment, had been denied mental health services when his insurance ran out, is the person who pushed Kendra Webdale to her death. He was discharged to the streets of NY with no support or referral.Karen's parents are suing the hospitals that discharged him to the streets, Andrew's parent are not suing them. We do not know how many acts of violence are the result of denial of treatment. We are also unaware of the number of acts of violence that result from ineffective treatment. ..."

Read more: http://www.nydailynews.com/opinions/2010/03/01/2010-03-01_renew_kendras_law.html#ixzz0hJrnJ0k2

"It's not a matter of proving that he did it: No one disagrees that on January 3, 1999, Goldstein pushed 32-year-old Kendra Webdale to her death in front of a subway car. Regardless of the outcome, Andrew Goldstein will finally be sent someplace where he can't hurt anyone. But the fact that he begged to be hospitalized for two years before the crime, and was turned away by doctors who knew he was dangerously mentally ill, points to a system that's even crazier than he is..."

Read more: http://www.time.com/time/arts/article/0,8599,40257,00.html#ixzz0hJzGHtP7

"Outpatient commitment statutes are often enacted hurriedly, typically in response to a single, well-publicized violent incident involving a person with mental illness. In New York, Kendra's Law was rushed through the legislature after the tragic death of Kendra Webdale, a young woman who was pushed in front of a subway train by Andrew Goldstein. When the bright lights fade, however, most states have abandoned the use of outpatient commitment. ...

Andrew Goldstein did not reject mental health treatment; instead, documents uncovered by a journalist revealed that Mr. Goldstein had diligently and persistently sought mental health treatment. The state had pushed through legislation designed to force unwilling or unable people to accept mental health treatment only to realize that it was the mental health system that was unwilling or unable to provide appropriate
treatment. This unwelcome news lead to the second realization, that people with mental illness would be forced to comply with treatment that didn't exist.

Source: http://www.peoplewho.org/readingroom/seltzer.htm

Do you see the irony in promoting forced treatment on someone who tried to get it but was consistently turned away due to lack of insurance?

If you find yourself scratching your head at the moment and wondering who is delusional and unable to discern fantasy from reality, I could hardly point fingers for I found myself doing the same thing.

spiritual_emergency · Mar 06, 2010 at 10:50 PM

Earlier today Mr. Jaffe shared yet another article he'd written about the violent mentally ill who are just too sick to know how sick they are.

Quote:

The shooter of two Pentagon Guards most likely suffered from anosognosia which is often associated with schizophrenia. Learn what you can do to help find a cure (and we're not looking for money).
http://www.huffingtonpost.com/dj-jaffe/pentagon-shooting-proves_b_488766.html

That link leads to a quote that is practically verbatim of what AppinIsobel had to say. You can read it if you choose to. You can donate to their cause if you choose to.

Meantime, in the course of these various discussions that have taken place from facebook I've heard some very important points that are relevant to forced treatment such as...

- A young man who was extremely reluctant to accept treatment until he found someone he could trust.

- A young woman who was grateful her family had the $60,000 dollars it cost to place her in a 28 day rehab program she personally identified as helpful.

- A male who cannot afford the cost of his medications. It was his comments that prompted me to go looking for the link on free meds that I posted earlier today in the resources area.

I remain of the opinion that the need for forced treatment is very slight. Rather, we should be focusing on creating forms and places of treatment that people will willingly choose if only for the simple fact that they're hurting, they're frightened, they know it, and they will gladly accept the kinds of help that actually help them. I wouldn't recommend lying to them. Lies destroy trust.

spiritual_emergency · Mar 10, 2010 at 11:59 PM

A little more info regarding DJ Jaffe and the Treatment Advocacy Center...

Quote:

"People care about public safety," TAC publicist D.J. Jaffee told attendees at a 1999 National Alliance on Mental Illness (NAMI) conference. "Once you understand that, it means that you have to take the debate out of the mental health arena and put it in the criminal justice/public safety arena."

Jaffe went on to point out that efforts by NAMI to enact 'assisted' treatment laws as a way to provide better care for the mentally ill had failed because the public doesn't care about the seriously ill. He said that when the media does focus on mental illness (e.g., following an act of violence), it provides an opportunity to communicate policies which can simultaneously help individuals with mental illness and protect the public.

At a psychiatrist's meeting in Baltimore, Maryland in 1993, (E. Fuller) Torrey expressed his concern that "the public stereotype that links mental illness to violence is based on reality and not merely on stigma."[3]

However, The National Stigma Clearinghouse, which monitors reports of mental illness and alleged violence, stated in 2000 that "Actual acts of violence by psychiatric survivors are few and far between. TAC embellishes each episode with bogus homicide numbers".

TAC publicist D.J. Jaffee stated in 1999 that "People care about public safety...Once you understand that, it means that you have to take the debate out of the mental health arena and put it in the criminal justice/public safety arena." and earlier in 1994 stated that "It may be necessary to capitalize on the fear of violence." Allegedly TAC has a strategy to "romance the press--producing material for soundbites, scenarios and statistics that can be used to pitch to the media."[4]

Source: Wikipedia - Treatment Advocacy Center

spiritual_emergency · Mar 11, 2010 at 11:23 PM

During my brief period of rubbing elbows with Mr. Jaffe at facebook I noted it was not necessary to distort data related to mental illness and violence and the need for timely, safe, human, affordable and compassionate care. There are problems and I was initially open to the idea that Mr. Jaffe might be sincerely interested in addressing them. Here's an article that provides a bit more background on Kendra's Law. Note that this law doesn't affect only the citizens of New York state but rather, helps to shape the thoughts and beliefs surrounding forced treatment regardless of state.

Quote:

January 17, 2010 - News of the Week

GOVERNOR PATERSON, NEW YORK LEGISLATORS: PLEASE RESTORE HIJACKED MENTAL HEALTH FUNDS

Unfortunately, New York never found the funds to build a promised community support system for people with psychiatric disabilities. Now more than ever, the missing community programs are needed.

Advocates' hopes soared in 1994 when the hard-won Community Mental Health Reinvestment Act (CMHRA) was signed by Governor Mario Cuomo. The CMHRA promised that savings from a massive shutdown of inpatient psychiatric beds would be used to finance community support programs.

As reported in 2002, this downsizing of the state's psychiatric beds saved $242 million dollars annually. But most of those savings did not reach the community mental health system as promised.

The 2002 report states that Governor George E. Pataki, who became Governor in 1995, transferred a large percentage of the psych center savings to the state's general fund. The governor reportedly also found other ways to move mental health funds to his higher priorities. In another blow to hoped-for progress, the governor let the Community Reinvestment Act expire in September 2001 and stonewalled attempts to revive it.

The severely hobbled system reached meltdown in 1999 when a fatal encounter between a prematurely-discharged hospital patient and an aspiring young writer in a Manhattan subway station sent shockwaves across the state. Albany's leaders responded by quickly passing a new state law permitting coerced community treatment of 'treatment refusers' (Kendra's Law).

But the essential community programs were rare in 1999 and are still rare today.

As for the subway assailant, his futile search for psychiatric treatment was revealed in a meticulously-documented cover story in the New York Times Magazine by Michael Winerip (May 23, 1999). Despite this revelation, his 'treatment refuser' label lives on in the press.

A scathing report of shortchanged funding and system failure was released on October 31, 2002 by Assemlyman Martin A. Luster, who was then the chairman of the State Assembly's mental health committee. It seems that copies of the report, titled Broken Promises, Broken Lives: A Report on the Status of the Mental Health Delivery System New York State, are in no official archive.

For a single xeroxed copy of the 49-page Luster report, email stigmanet@webtv.net Please include a postal mailing address.

We urge Governor Paterson, the Legislature, the media, and the public to review this still-relevant report.

Source: stigmanet.org

The National Stigma Clearinghouse also offers an abundance of material related to Kendra's Law and forced treatment via the following links:

Web Page: Kendra's Law Controversy 2005
Web page: Kendra's Law Updates (2006 - Current)

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