Q: What got you interested in serious mental illness?
DJ: In the 1980s, my wife and I became guardian for my sister-in-law and the day treatment program wanted to kick her out because she wouldn’t go to group therapy. I asked her why she wouldn’t go. She said everyone talked about suicide which she found depressing and it was also against her Catholic faith. In other words, she had two really good reasons for not wanting to go and for that they were going to kick her out. That made me realize how messed up the mental health system so I started volunteering with a local NAMI which at that time focused on the seriously mentally ill.
Q: What led you to write “Insane Consequences”?
DJ: I had been advocating since the 1980s and knew I had something to say: One reason the seriously mentally ill can’t get treatment is because so many mental “health” advocates (as opposed to mental “illness” advocates) shun the seriously mentally ill and don’t advocate for the services they need. Too many advocates are letting political correctness trump science. As a result of this, we now spend way too much money on mental health and not enough on the seriously ill. Anything that makes you sad is now promoted as being a ‘mental health condition’ and anything that makes you happy is now promoted as being a ‘therapy.’ Pop psychology and neuro-nonsense have run amok. I wanted to expose the trend and how to fix it.
Q: That’s a pretty big charge. How are the seriously ill shunned by mental health advocates and what’s the difference between serious mental illnesses and the others?
20% of adults have something in the DSM, but only about 4% have a really serious mental illness. There are various definitions of serious mental illness, but generally it is one that significantly impairs someone’s ability to carry out daily life activities. The serious mental illnesses tend to be, but are not exclusively, schizophrenia spectrum disorders and treatment resistant bipolar disorder. But other disorders can also be serious.
Q: How are the mental health advocates shunning them?
Here’s the issue: Many mental health advocates and advocacy organizations like NAMI National, MHA, CMHS, and the peer community want to, as Dr. Ron Pies said, “romanticize, trivialize and normalize the mentally ill.” Hence, they hide the 4% and unpleasant truths about some of them. Here are some examples.
- Mental health advocates generally won’t bring attention to the fact that when the most seriously ill go untreated, they are more violent than others and therefore refuse to advocate for policies like Assisted Outpatient Treatment to reduce that violence. Instead they try to convince the public of the platitude that the mentally ill are no more violent than others. That statement is true if you look at the treated. It is not true if you look at the untreated seriously mentally ill. The studies they quote show treatment works, no more no less.
- Mental health advocates generally won’t bring attention to the fact that some seriously mentally ill need hospitals, there are not enough of them and not everyone recovers because that runs counter to their goal of convincing the public that everyone recovers and if we had more community services we wouldn’t need hospitals.
- Mental health advocates generally refuse to focus on the fact that the biggest barriers to care for the seriously are the lack of services, doctors, clubhouses, group homes, transportation options, etc., because that runs counter to their goal of convincing the public that the biggest barrier to care is stigma.
- Mental health advocates generally won’t focus on the fact that anosognosia, being unaware you are ill, is a real problem facing 40% of the seriously ill, because that is counter to their goal of convincing the public that everyone should be empowered to self-direct their own care.
So the seriously ill are shunned, marginalized and ostracized. They are not the poster children for recovery they want to associate with. Insane Consequences addresses these issues dead on.
Q: You’ve taken an awful lot of heat for going up against the status quo and calling government and mental health leaders out. How did you gain the confidence to do that?
I had a lot of doubts that I was smart enough or knew anything others don’t. Then I read Malcolm Gladwell’s “Outliers.” He studied super-successful people and found they had one thing in common: they all had been doing what they were successful at—whether programming computers or shooting a basketball- for at least 10,000 hours. Well since I’ve been advocating since the early 1980s, I realized I have 10,000 hours experience, so maybe I really do know something. But I still had my doubts, so I decided to write a really well-researched book, where each assertion was backed by research or government source documents so advocates could go right to the sources if they want. I give URLs for most of them. In other words, the book isn’t “DJ says such and such.” It’s what the research shows. I wrote it to give advocates the information they need to challenge the status-quo.
Q: Lot’s of advocates have written books or want to but can’t find a publisher. How did you do it?
DJ: I also thought I wouldn’t find a publisher and thought I’d have to self-publish. I didn’t think there would be a big market for Insane Consequencesbecause it is not about the 20% with any mental health condition, it is about the 4% who are seriously ill. And it is even narrower than that, because it is on policy. I jokingly described it as a very important, thick, well researched book that about ten people care about. I didn’t think a publisher would be interested. But after writing it and before self-publishing I decided to send a proposal to agents. There’s a whole process for doing that. What interested them was that I have a very large following on Facebook and Twitter and have written a lot of op-eds. To them, that was proof that my ideas have merit and there is a market for the ideas. One of the agents took the proposal to Prometheus and they published it.
Q: How’s the book doing?
I’m shocked. It’s doing very well and is now in it’s third printing. Advocates love it because it gives them the info they need to advocate more effectively. Many are buying copies in bulk and sending them along with a cover note to legislators and mental health officials. Libraries are stocking it. The book has led to numerous speaking engagements and a TedTalk in front of CEOs of the major mental health organizations that I criticize in my book. So I’m very happy with it.
Q You should say, that all your receipts will be donated to charity.
DJ: Thank you for that. The Treatment Advocacy Center in Arlington, VA and Mental Illness Policy Org., will receive any proceeds I get. But publishing a wonky book for policy makers is not a money maker.
Q: How do you make money then?
DJ: I’ve lived modestly, worked hard, and don’t have kids, so I am able to support myself. Families of the seriously mentally ill who are inspired by what I’m doing make donations to Mental Illness Policy Org., a 501(c)3 I established. I take no money from government, pharmaceutical companies or any corporations at all. I have no problem speaking truth to power.
Q: Tell me about the book.
Section 1 describes the Insane Consequences of ignoring the most seriously ill: increased homelessness, suicide, victimization, perpetration, arrest, violence, imprisonment, and suffering. It gives the statistics, case histories, and documents the drain on the criminal justice system, the danger to the public and patients, and the cost to taxpayers.
Section 2 details the difference between poor mental health and serious mental illness for those new to the subject. While the boundary between the two is debatable, the extremities are clear. It describes the science of serious mental illness because policy should be driven by that science.
Section 3 introduces the major mental health organizations that fail the most seriously ill, with particular attention to the Substance Abuse and Mental Health Services Administration (SAMHSA), the Center for Mental Health Services (CMHS), and the nonprofits they fund. It also identifies the good guys who are trying to convince the government to treat the most seriously ill. It is important to note that since Dr. McCance Katz took over as head of SAMHSA and Paolo Del Vecchio was removed as head of CMHS, there have been improvements.
Sections 4 and 5 document exactly how the mental health industry, advocates, professional peers, and advocacy organizations prevent help from reaching the seriously mentally ill and encourage the government to waste money on programs that don’t help.
Then there are appendices on the difference between poor mental health and serious mental illness; anosognosia; violence statistics; AOT studies and HIPAA reforms.
Q: What are you hoping to accomplish?
Globally I want to focus existing mental health funds and incremental investments on those who need help the most, not the least. We have to send the most seriously ill to the head of the line, rather than jails shelters prisons and morgues. We have to prioritize, not marginalize the seriously ill. We need to support programs, like Clubhouses, that have proven track records of improving the most meaningful metrics which are rates of homelessness, arrest, incarceration, violence, suicide, and needless hospitalization of the seriously ill. Four specific policies on the federal level to help accomplish that are
First, we should eliminate the IMD Exclusion. It prevents Medicaid from reimbursing states for seriously mentally ill adults who need long-term hospital care. It applies to no other population than the mentally ill. It’s a blatant form of government discrimination and created the hospital bed shortage. I am encouraging advocates to get their state legislatures to pass resolutions calling on Congress to eliminate it.
Secondly, we should robustly fund Assisted Outpatient Treatment (AOT). AOT allows judges to order a tiny group of the most seriously ill to comply with up to one year of treatment if they have a history of multiple arrests, incarcerations or hospitalizations as a result of not complying. It reduces homelessness, arrest, incarceration in the 70% range, an extraordinary result given that it is only for the most seriously ill. It would be great if the Centers for Medicaid and Medicare Services (CMS) made the $2,000-$5,000 court costs of AOT Medicaid reimbursable. They are essentially case management services.
Thirdly, we should expand congregate living facilities like group homes. The industry is focusing on Housing First, and scatter site subsidized apartments with drive-by case management services. That works for some, but some of the sicker wouldn’t have to live on the streets or in hospitals if there were group homes and other facilities where there is 24 hour onsite support.
Finally, we should measure meaningful outcomes and work to improve those. The most important barometers of success or failure are rates of homelessness, arrest, incarceration, suicide, and needless hospitalization of the seriously mentally ill. But no one is measuring those and holding mental health officials accountable for reducing them. Instead of useful progress measures they are tabulating useless process metrics, like number of calls to a helpline or customer satisfaction (which goes up as long as the unsatisfied leave the program).
Q: Isn’t stigma a big issue?
DJ: Stigma a non-issue. First of all, there is no stigma. Mental illness is a no-fault biologically based disorder. We should stop teaching there is stigma and start teaching there is none. There is discrimination. And eliminating discrimination is where we should focus. Gays, African-Americans, rape victims, people with cancer all used to claim stigma and got nowhere. Then they decided to fight discrimination. Gays fought for the right to marry, African Americans for the right to vote, rape victims for victim’s rights, and cancer survivors for more research. It is only the mental health advocates who are still making stigma, rather than discrimination their focus. They give plaques to mayors who say they are against stigma at the same time those mayors are discriminating by refusing to build group homes. The homeless guy eating out of a dumpster and the delusional son, cowering in his room are not doing so because of stigma, they’re doing so because there are no services for them. Stigma is the black hole of advocacy diverting thousands of people away from making real change.
Q: If not stigma, what should people work on?
There are scores of issues to work on. I tell advocates to work on whatever they are passionate about (other than stigma) but to go deep. Become the expert. It is not enough to say there is no housing, no transportation, no clubhouses, no easy access to hospitals. You have to identify why that is so, what level of government can fix it, and how to bring pressure on it to do so. Go deep.
Q Where are you focusing your advocacy right now?
I lost my wife of 27 years recently after a long illness so during that period I scaled back my work, and cancelled speeches, but I am back up and running full speed ahead. The biggest thing taking up my time is giving speeches designed to seed the theme developed in my book, Insane Consequences: How the Mental Health Industry Fails the Mentally Ill. If anyone wants me to address their group, they can reach me via our website.
Q: Finally, How’s your sister in law doing?
DJ: Thanks for asking. She lived in a group home for many years where she gained the skills to eventually live independently. She lives in her own apartment, supported by the county but as her closest relative, I supplement that by arranging additional services. It’s working, but it’s tenuous. I give her a great deal of credit and she is the inspiration for everything I do. In addition to Dr. Torrey and my wife, the book was dedicated to her.