(9-13-18) In the past decade, D. J. Jaffe has emerged as an influential player. He is frequently quoted in newspapers, including yesterday’s New York Times and this week’s New York Magazine. Despite his criticism of mental health providers – – as outlined in his book, INSANE CONSEQUENCES:  How the Mental Health Industry Fails the Mentally Ill –  Jaffe was invited to give a Ted Talk at the National Council for Behavioral Health’s national convention in 2017.

Once active in the National Alliance on Mental Illness and the Treatment Advocacy Center, Jaffe created his own website and organization called Mental Illness Policy. Org., which he now uses as his base.

Jaffe has garnered his share of detractors as well as fans. His ideas are frequently opposed by peer advocates and consumer groups. You might remember that Jaffe was the most vocal of a so-called Focus On Serious Mental Illness platform – four candidates – who ran unsuccessfully for the  NAMI board. He is characterized by some NAMI leaders as a “perpetual bomb thrower” whose primary focus is on Assistant Outpatient Treatment. I recently learned that he had helped scuttle a planned SAMHSA expert panel because he objected to the individuals who SAMHSA had invited to present.

So who is this pony-tailed controversial advocate?  I decided to ask him a series of questions via email.

1. What got you interested in mental health, or as you would prefer, mental illness?

In the 1980s, my wife and I became guardians for my sister-in-law and the day treatment program that she was attending wanted to kick her out because she refused to attend group therapy. I asked her why. She said everyone talked about suicide, which she found depressing and against her Catholic faith. It seemed to me that she  had two really good reasons for not wanting to attend and because of that they were going to kick her out. That made me realize how messed up the mental health system is so I started volunteering with a local NAMI chapter, which at that time was focused on the seriously mentally ill (SMI).

2. You recently were able to scuttle a SAMHSA expert panel event by working behind the scenes. Why did you not want this panel to happen?

That’s not really a fair statement. First of all, I am a huge supporter of all Assistant Secretary of Mental Health, Dr. Elinore McCance-Katz has done to focus SAMHSA on helping the seriously mentally ill and center it around science rather than political-correctness.

But the Center for Mental Health Services (CMHS) unit at SAMHSA still focuses on metrics like improving “mental wellness” in the masses and running useless pop-psychology webinars, rather than reducing homelessness, arrest, incarceration and needless hospitalization of people with serious mental illness.

CMHS claims to want to change and invited me to a “stakeholder” meeting. But the CMHS organizer wouldn’t tell me who was attending or what the agenda was, so naturally I turned down the invite. After further discussions, I discovered that no corrections officials, police chiefs, sheriffs, district attorneys or judges were being invited. 400,000 seriously mentally ill are behind bars. How can corrections not be a stakeholder? NY Police alone went on 165,000 calls for emotionally disturbed persons last year. How can police not be a stakeholder? Criminal Justice knows a lot about serious mental illness because the mental health system offloads so many seriously ill on them. They would be able to tell a CMHS stakeholder meeting how more hospital beds, easier to meet civil commitment criteria, greater use of AOT, group homes, long-acting injectables and other interventions could help stop the mental illness to jail pipeline. Without them there, the meeting would likely focus on things that have nothing to do with helping the seriously ill, such as educating the public, and using person first language, worthy endeavors, but largely irrelevant to solving the biggest problems.

So I and others brought that to their attention—that people who know important information about the seriously mentally ill were being excluded from the stakeholder table in favor of rounding up the usual suspects. After hearing from several of us, the powers that be elected not to proceed.

3. You played a key role in working with former Rep. Tim Murphy (R-Pa.)  in getting the Helping Families In Mental Health Crisis legislation passed. Are you satisfied with that legislation and do you see any credible changes because of it?

I am happy with some of it, but not all of it. But that’s the nature of politics. Funding AOT pilot programs and allowing DOJ to fund them was huge, because once localities try it, they realize how much it helps the seriously ill. Murphy also required the collection of metrics on incarceration of the mentally ill. That will lead to efforts to reduce it. He tried to insert language to require peers to work within the purview of medical officials and to have a basic understanding of the role of treatment but the CMHS-funded peer community succeeded in getting those provisions removed.  They also had the HIPAA provisions watered down so much as to be meaningless.

4. You have a reputation for being a policy geek. Your book contains numerous recommendations, but what do you think are the two biggest changes that need to be made on the federal level to improve the lives of individuals with mental illnesses?

Globally we have to focus existing mental health funds 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. Two specific policies on the federal level to help accomplish that are:

1. 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.   Rep. Eddie Bernice Johnson (D., TX) has been the leader on this and worked with Rep Tim Murphy to chip away at this in the Helping Families in Mental Health Crisis Act but the most important IMD ameliorating provisions were removed from the final bill
2. Robustly Fund Assisted Outpatient Treatment (AOT). AOT allows judges to order a tiny group of the most seriously ill to comply with 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.And because you asked for two, I won’t mention housing, which I know you’ve been working on through the Corporation for Supportive Housing.

5. You have served on the NAMI and TAC boards. Why did you feel it necessary to start your own website and group?

The group I started, Mental Illness Policy Org focuses on the group NAMI National no longer does: the 4% who are the most seriously ill. Disaffected and disaffiliated NAMI are the core of Mental Illness Policy Org’s support.

Here’s the problem, to get more members NAMI felt it had to expand beyond families of the most seriously ill, which used to be their core constituency. Today, the NAMI national office, like MHA, CMHS and others look at the existence of the seriously mentally ill as a public relations disaster. So they sweep them under the rug. For example, bringing attention to the fact that when the most seriously ill go untreated, they are more violent than others and how to reduce that violence, would make it harder for NAMI to convince the public of the platitude that the mentally ill are no more violent than others.

Bringing attention to the fact that some SMI need hospitals and not everyone recovers is counter to their goal of convincing the public that everyone recovers and if we had more community services we wouldn’t need hospitals.

Focusing on the fact that the biggest barriers to care for the seriously are the lack of services, doctors, clubhouses, group homes, transportation options, etc., is counter to their goal of convincing the public that the biggest barrier to care is stigma.

Focusing on the fact that anosognosia, being unaware you are ill, is a real problem facing 40% of the seriously ill 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 by NAMI, MHA, and others. They are not the poster children for recovery they want to associate with. Now having said that some state organizations and the local affiliates still focus on the seriously ill and the Family to Family program offered by locals is excellent.

The Treatment Advocacy Center (TAC) is different. While I have no official connection, I am still hugely supportive and donate money to it as I encourage everyone to do. Much of my work relies on theirs. They are our voice in DC.

But so much needs to be done that TAC can’t do it all. If you have an advocacy initiative that doesn’t make TAC’s cut there’s nowhere else to go. They were the only game in town. That’s where Mental Illness Policy Org tries to help, not by ‘leading’ the effort, but simply providing high-quality easy-to-access policy information and a place where advocates can organize with others locally or nationally. What Mental Illness Policy Org is trying to do is empower and help grassroots advocates to organize and inform themselves.

Our efforts tend to focus on five areas: civil commitment reforms that allow treatment before tragedy, expanding assisted outpatient treatment, increasing the number of hospital beds, freeing parents of HIPAA handcuffs, and improving the consequences of ‘not guilty by reason of insanity’ findings.

But for example, in California, conservatorships and a housing ballot initiative recently became an issue. California advocates were able to do some of their organizing on pages we set up without the need for any help from TAC or Mental Illness Policy Org.

6. Your views are often considered provocative. How do you answer critics who see you as being a disruptive source in mental health rather than one who builds collaborations?

I disagree. (Grin).

Respectfully, having ideas that are provocative and disruptive is a good thing, not a bad thing.

But I understand what you mean. The first thing I tell most people is that I am not a “mental health” advocate at all. I am a “mental illness” advocate. I advocate for the most seriously ill. To put it in perspective 20% of adults have something in the DSM but only 4% have a serious mental illness, such as schizophrenia or bipolar,  that has a major impact on their ability to function. The needs of the most seriously ill differ from the higher functioning and explains why what I say is different from what the mental health advocates are saying. That’s why they consider me as being provocative and disruptive.

Take the issue of violence.

After every mass tragedy, the mental health advocates fire off “mentally ill are no more violent than others” press-releases because the 20% of adults with a mental health condition that they represent are no more violent than others. But as an advocate for the 4% who are seriously ill, I highlight that the seriously mentally ill who go untreated are often more violent than others. I do that so we can take steps to reduce the violence. People in the mental health industry know the connection to violence I’m talking about is there, but they want it to be our little secret. They know psychiatric units are locked and heart units aren’t. They know nurses in psych units wear panic buttons and those in liver units don’t. They know we train police to deal with the mentally ill not those with psoriasis. And they know our outreach workers go out in pairs for their own safety. It may be provocative and disruptive to acknowledge the connection to violence but it’s also true and it’s necessary if we want to reduce the violence.

Globally, I don’t think it’s accurate to say I don’t collaborate.

For example, even though I am critical of Mental Health First Aid (MHFA), Linda Rosenberg of the National Council on Behavioral Health, demonstrating more class than I’ll ever have, invited me to give a no-holds-barred TedTalk to her group that’s become one of their most popular. And she presented me with another opportunity to participate in a violence reduction initiative. I’ve been invited by scores of local NAMI’s and behavioral health centers to share my ideas with them. I would love to work with more mental health groups. But it has to be on issues most important to the seriously ill, such as increasing hospitals and assisted outpatient treatment, removing HIPAA Handcuffs from parents, and enacting more humane civil commitment standards.

I haven’t found many interested in that.

Because the mental health groups are averse to working on those issues, most of my collaborations are with others outside the mental health industry. This includes police, corrections and others in criminal justice. It includes think-tanks and the public at large. They find my ideas make sense. For example, I’m very liberal but have been doing a lot of work with Manhattan Institute, a conservative think tank that has done some great work in this area. I just helped The Marshall Project, which focuses on incarceration put together their story that ran in New York Magazine about Kendra’s Law. I’ve spoken to judges at the National Mental Health Court Summit, and police at CIT Conferences. When mental health folks say I don’t join collaborations, I think what they are saying is that they don’t want to join the ones I’m in because they focus on sending the seriously ill to the head of the line. If any mental health group wants me to speak to them, they can reach me via our website.

7. 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. In it, I argue that we have to spend less improving mental wellness in the masses and more on delivering treatment that reduces homelessness, hospitalization, incarceration and needless hospitalization of the seriously ill. I continually provide information to the media and legislators and advocates on that.

I am using the release of Andrew Goldstein who pushed Kendra Webdale to her death to bring attention to the incredible success of Kendra’s Law so it gets more widely used.  I am also looking to do more with Manhattan Institute. I lean very liberal and they lean conservative, but I have found that Dems have been taught by the mental health lobby that throwing more money at mental health is the same as delivering treatment to the seriously ill and they are not. Conservatives on the other hand, may be tighter with money for social services, but do understand that when it is spent it should go to solving the most important problems not the least important. I’m also working with attorneys on an emergency room initiative.

Thanks for the opportunity to answer these questions.

More info

Mental Illness Policy Org webpage

The Mental Illness Policy Org Facebook Page

Our National Alliance on Serious Mental Illness Facebook Group

Mental Illness Policy Org on Twitter