A Huge Loss for Families

By Marvin Ross

I’m a little late writing this for a number of reasons but one has been shock. Many of my readers are already familiar with the fact that DJ Jaffe has left this world and left it very suddenly. DJ told very few people of his worsening leukemia and continued to work until almost the very end. In fact, a few days before his death, he sent me a note to tell me that he had removed one of my posts from his Facebook Page, the National Alliance on Serious Mental Illness, because it violated his policy.

I put it back and replied that I did not think I did violate policy. His reply was OK out of friendship, I will let it go this time.

Next, I heard he was gone. Like most people, I was shocked.

DJ first became involved in the business of advocating for the seriously mentally ill when his wife’s sister moved to New York to live with them. She had schizophrenia and he and his late wife found themselves embroiled in the politics of advocating for someone with a disease that has been and still is largely ignored by society.

He quickly learned that families are also ignored and often vilified and so this was the group he stood up for and tried to empower. DJ, over the years, has been involved with NAMI (the National Alliance of Mental Illness), the Treatment Advocacy Center and his own creation Mental Illness Policy Org. Thanks to his tireless work, he is responsible for the introduction of Kendra’s Law in New York State and the introduction in the US of the Helping Families in Mental Health Crisis Act

Kendra’s Law allows courts -after extensive due process- to order a certain group of narrowly defined individuals with serious mental illness who already have a past history of multiple arrests, incarcerations or needless hospitalizations to accept treatment as a condition for living in the community. Before Kendra’s Law, the law required people so ill they refuse treatment to become dangerous before they could be required to accept treatment. Families felt the law should prevent dangerous behavior, rather than require it. Kendra’s Law allows judges to order the recalcitrant mental health system to serve people with serious mental illness, rather than cherry picking the easiest to treat for admission.

Based on numerous studies, Kendra’s Law has:

reduced homelessness (74%); reduced suicide attempts (55%); reduced substance abuse (48%); reduced physical harm to others (47%); reduced property destruction (43%); reduced hospitalization (77%); reduced arrests (83%); reduced incarceration (87%).

If you are looking for research material, the Mental Illness Policy website is a go to source. DJ’s book, Insane Consequences, is another excellent source of material for anyone wishing to learn of the realities of serious mental illness. I reviewed the book when it first came out and pointed out that all the royalties he gets from the book are donated to Mental Illness Policy Org and to the Treatment Advocacy Center.

DJ was a friend who I talked to and exchanged e-mails with over the years but like many friends and colleagues on the internet, I never did get the chance to meet him in person. Something I do regret but long before I knew who he was, I quoted one of his advocacy issues in my own book on schizophrenia. What he had to say then is still relevant today so allow me to show you what I said back in 2008 in Schizophrenia Medicine’s Mystery Society’s Shame:

Harvard Law School or Bellevue Psychiatric – Which is harder to Get Into?

If you are mentally ill, the answer is easy – Harvard! At least that is the opinion of D. J. Jaffe, a spokesman for the New York City Friends and Advocates of the Mentally Ill as quoted in the New York magazine “Manhattan Spirit” in 1991 and reported in Torrey (Out of the Shadows). Jaffe was referring to the case of a New York homeless woman named Joyce Brown and recounted in the Torrey book. It is bizarre but a perfect example of the absurdity of the system.

Ms. Brown was a mentally ill homeless woman who resided on a steam grate at E 65th Street and Second Ave in Manhattan. She urinated on the sidewalk and defecated in the gutter or on herself. At times, she tore up money passersby gave her, ran out into traffic and shouted obscenities. Many times, she was not properly dressed for the cold weather. Five times psychiatric outreach teams took her to hospital but each time she was released by psychiatrists who deemed that she was not a danger to either herself or others.

On the Diane Rehm National Public Radio show after the Virginia Tech shootings by a mentally ill man who had fallen through the cracks and should have been hospitalized before he engaged in his murderous rampage, Torrey stated somewhat sarcastically that in order to be deemed a danger to yourself or others, you have to either try to kill yourself in front of the psychiatrist or try to kill the psychiatrist.

Ed Koch, the mayor at that time, saw the women and tried to have mental health professionals get her treatment. He was told that she was not deemed to be in danger or dangerous. Koch proposed new and less restrictive legislation that would make it easier to hospitalize someone. Koch referred to the civil libertarians who opposed hospitalizations as the crazies who deny people the right to treatment.

Under his new legislation, Ms. Brown was hospitalized but the New York Civil Liberties Union challenged that in court. In claiming that Ms Brown was not a threat they argued the following in her defense:

• Other New Yorkers also urinated on the sidewalk
• Defecating on oneself is not really a threat to one’s health 
• Running into traffic was no different than jay walking 
• Tearing up money was a symbolic example of the woman’s independence 
• Her obscene language was no worse than what is commonly seen in movies

Judge Robert Lippman found for the Civil Liberties Union and stated that “the sight of her may improve us”. By being an offense to aesthetic senses, she may spur the community to action

Upon her release, Ms. Brown was invited to appear on the Phil Donahue Show and to address a forum at Harvard Law School.

And the legal situation has not improved.

Here is an older interview of DJ with John Stossel

RIP DJ. You’ve done well and both the families of those with serious mental illness will miss you as will the seriously mentally ill. And DJ would agree that this obit should be dedicated to the hard working and stressed out parents (mostly mothers) who struggle to help their kids when no one else will.

Twitter, Thomas Szasz and the Channukah Attack

Image by OpenClipart-Vectors from Pixabay

By Marvin Ross

At the end of December US psychiatrist Allan Frances tweeted that in 1977 he had dinner with Thomas Szasz (The Myth of Mental Illness). Frances reported that he asked Szasz if he would intervene were his child suicidal because of psychosis. He smiled/answered: “I am a father first, a libertarian second”.

Dr Frances responded that “Szasz could hold extreme views re meds/commitment only because he never once treated a severely ill patient”.

Dr George Ikkos replied that “In 1994 Szasz insurance paid $650,000 for negligence to widow of patient with “manic depression” who committed suicide following his advice to stop lithium. The source is a book called Mad Muses by Jeffrey Berman (P110).” Dr Ikkos is an “elected Honorary Fellow of the Royal College of Psychiatrists. The Honorary Fellowship is the highest honour the College bestows” (from his website.)

Also chiming in to this interesting twitter exchange was Dr Mark Ruffalo who provided a link to an interview that Szasz did with Jonathan Miller in 1983. He summarizes:

Szasz concedes that society should treat the gravely disturbed (“mad” or psychotic) person in the same way it treats the person who has been rendered unconscious by an accident, implying support for involuntary treatment in these cases.

The entire interview can be seen below and these comments are made around the 34 minute mark. Prior to that, Szasz states that psychiatrists either lock up the innocent or free the guilty and that no mental illness existed prior to the advent of asylums in the mid 18th century.

I’m not sure what provoked the initial tweet by Dr Frances but a couple of comments before transitioning to Channuka. The initial question asked of Szasz is something that I always ask of doctors when they propose a certain course of treatment or a medication. If this was you (or a spouse or parent) would you still suggest that? We should all do that.

The other comment pertains to libertarianism. Szasz suggests that libertarians would always propose no involuntary action. I’m not sure that is a valid position for libertarians and it is definitely not for a psychiatrist I know who is one. This particular Toronto psychiatrist once told me that no one is as libertarian as he is and he firmly supports involuntary committal and treatment. People have an absolute right to decide their own fate but in the case of someone who is psychotic, he said, their mind is incapable of making rational decisions. It would be wrong to allow them to make those choices when so impaired.

While this twitter feed was happening, New York State and FBI officials were declaring the attack against a Channukah party in New York State to be an act of domestic terrorism and that the perpetrator, Grafton Thomas, would be charged with hate crimes. Of course, we all now know that Mr Thomas is a man with untreated schizophrenia.

It is not a hate crime nor is he a domestic terrorist.

He is a delusional soul who has not been provided with treatment as the mental health advocate DJ Jaffe pointed out in his excellent assessment in the New York Daily News. Jaffe points out that Thomas’ long term pastor could not understand why he had never been institutionalized stating “There hasn’t been anyone who has given a real solution to deal with a grown man who is dealing with schizophrenia, other than ‘Go home and call us if something happens.’ ”

Situations like this are not unique to New York State or to the United States but to Canada as well. Every one of those jurisdictions has examples of crimes committed with and without deaths due to the failure to treat people with serious illnesses.

Of course, one of the key reasons that people do not get proper treatment even if it requires involuntary hospitalization stems from the works of Szasz and all the others who deny the existence of serious mental illness.

What is also equally galling is the rise of anti-semitism and other forms of racism in the world today. While US officials were quick to jump on the Channukah attack as a hate crime, they have seemingly ignored others. In the week before the holidays, there were 4 attacks against Jews in the New York City area plus the assault in Jersey City of a Kosher supermarket according to Bernie Farber. Farber is the Chair of the Canadian Anti-hate Network.

Farber also reminded readers of Trump’s anti-semitic comments at a dinner for the Israel American Council. Faber neglected to mention Trump’s comments after the White Nationalist march in Charlottesville or Rudy Guliani’s anti-semitic tirade as reported by CNN.

Attributing the violent delusions of a man with schizophrenia as a hate crime when the villain is our failure to treat mental illness while ignoring real acts of hatred is a travesty.

I never thought I would ever applaud anything from Boris Johnson or from a Chasidic Rabbi but both got it right. Johnson delivered a very forceful speech on fighting anti-semitism while the Rabbi whose house was invaded spoke out about the need for greater understanding and support between minority communities. “The Hasidic Jews of Monsey must ignore the outsiders who want us to take up arms and politicize our tragedy.”

Insane Consequences Review – Mandatory Reading for Students, Politicians and Health Care Bureaucrats

By Marvin Ross

Insane Consequences How the Mental Health Industry Fails the Mentally Ill by US advocate, DJ Jaffe is a tremendous resource for anyone wishing to understand the industry that has developed around mental illness. And that is an industry that ignores the most seriously ill in favour of promulgating programs that are not evidence based, that are grounded in social theory rather than scientific theory, and generate jobs for the professional carers.

I am absolutely amazed at the amount of work that has gone into this volume. If anyone doubts Jaffe’s conclusions or statements, his sources are well laid out so you can check on them for yourself. A great deal of the problems with mental illness treatment in the US is its totally absurd health care system which baffles those of us who live in countries with universal single payer health care.

A few years ago, the Bridgeross author, Erin Hawkes (When Quietness Came: A Neuroscientist’s Personal Journey with Schizophrenia), appeared on an NPR radio show in Ohio to talk about her book. The interviewer was amazed at how much care and treatment she received in both Halifax and then Vancouver. How much did it all cost, she was asked. She thought for quite  awhile and said, “I think I once paid for an ambulance ride”. The interviewer was stunned.

But then, we don’t have absurd rules like the Institute for Mental Disease (IMD) exclusion. Because of this rule, Jaffe points out, Medicaid will not reimburse states for psychiatric beds. When the states cannot get reimbursed, they close the hospitals.

However, despite the difference in how health care is funded, most of what Jaffe talks about is relevant for Canada and, I suspect, other western countries. The seriously mentally ill are ignored for the most part, make up a huge proportion of the homeless and of the prison population. The focus, as Jaffe discusses, in the US and in other countries is on stigma which helps no one, on denying the connection with violence for those who are untreated, and on the misguided concept that people are free to decide their own fate when they lack the capacity to do so and are thus left to fend for themselves when they need to be hospitalized.

While medication is the cornerstone of proper treatment, there are still non evidence based theories being flogged as replacements for the medications. We have Open Dialogue from Finland that lacks any proper evidence, Mental Health First Aid, prevention programs to prevent illnesses where the cause is not known, and to foster peers with so called lived experience to replace trained medical staff. All discussed in this book.

I should also mention that Jaffe talks about the problems that caregivers have dealing with the system because of privacy laws. I quoted him in my Huffington Post blog on the problems that caregivers have with a suggestion that we all deserve a hug.

All of the book is valuable as a resource but what I found most helpful was his Appendix on the studies of Assisted Outpatient Treatment (AOT). These orders compel a mentally ill individual to accept treatment in the community. If they refuse, then they can be hospitalized. Jaffe cites about 20 studies that demonstrate the effectiveness of this program to reduce homelessness, incarceration, violence, reduced hospitalizations, and emergency department visits to name a few.

This book should be mandatory reading for all students in mental health counselling programs, nursing, social work and medicine. It also needs to be read by government policy makers. Money can be thrown at a problem but unless that money is spent wisely on evidence based programs, it is wasted. And that is what happens today.

Finally, because Jaffe is donating all his royalties to  the Treatment Advocacy Center and to Mental Illness Policy Org, purchasing the book will help those groups better advocate for the seriously mentally ill.