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DJ Jaffe’s Legacy and the Future of Mental Illness Policy Reform

Dominic Sisti Assistant Professor and Director, the Scattergood Program for Applied Ethics of Behavioral Healthcare, Perelman School of Medicine at the University of Pennsylvania
John Snook Executive Director, Treatment Advocacy Center
Pete Earley Advocate; Author, Crazy: A Father’s Search through America’s Mental Health Madness
Stephen Eide Senior Fellow, Manhattan Institute; Contributing Editor, City Journal
Thu, Sep 24, 2020 EVENTCAST

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DJ Jaffe’s Legacy and the Future of Mental Illness Policy Reform

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Forum

DJ Jaffe’s Legacy and the Future of Mental Illness Policy Reform

Dominic Sisti Assistant Professor and Director, the Scattergood Program for Applied Ethics of Behavioral Healthcare, Perelman School of Medicine at the University of Pennsylvania
John Snook Executive Director, Treatment Advocacy Center
Pete Earley Advocate; Author, Crazy: A Father’s Search through America’s Mental Health Madness
Stephen Eide Senior Fellow, Manhattan Institute; Contributing Editor, City Journal EVENTCAST 01:00pm—02:00pm
Thursday September 24
Thursday September 24 2020
PAST EVENT Thursday September 24 2020

DJ Jaffe passed away on August 23rd, 2020. DJ was the executive director of Mental Illness Policy Org., an adjunct fellow at the Manhattan Institute, and one of our nation’s most prominent advocates for the seriously mentally ill. DJ helped lead the campaigns to pass New York’s Kendra’s Law and the federal Helping Families in Mental Health Crisis Act. His 2017 book Insane Consequences: How the Mental Health Industry Fails the Mentally Ill, is a masterwork of social policy analysis. DJ was a friend and ally to numerous families of mentally ill relatives and others working to reform the system.

This event will reflect on DJ’s legacy and look forward to the prospects for future reform. Thanks in no small part to DJ’s efforts, the future holds promise. For example, there is now a bipartisan consensus on the urgent need to treat mental illness among our incarcerated and homeless populations. At the same time, many challenges remain. The mental health services system remains fragmented and hard to navigate, inpatient bed capacity is inadequate, and too many seriously mentally ill individuals lack access to appropriate treatment options.

On September 24, the Manhattan Institute hosted a virtual discussion on the legacy of DJ Jaffe and the future of mental illness policy reform.

Event Transcript

Stephen Eide:

Good afternoon. My name is Stephen Eide. I'm a senior fellow at the Manhattan Institute, contributing editor to City Journal, and I'll be moderating today's event, DJ Jaffe's Legacy and the Future of Mental Illness Policy Reform. Thank you all so much for joining us. DJ Jaffe was a colleague of mine at the Manhattan Institute, executive director of Mental Illness Policy Org, author of the important 2017 book, Insane Consequences, and more generally, one of the most important advocates for the seriously mentally ill in America. We lost him almost exactly a month ago to this day after a struggle with cancer. When DJ passed away last month, we at the Manhattan Institute knew that we wanted to do something for him. We wanted to honor him with an event. But we had to give some thought as to what form that would take. As any of you all know, if you ever worked with DJ, DJ never wanted things to be all about him. For DJ, it was always about advancing the cause of mental illness policy reform, effecting improvements to the lives of mentally ill Americans in very material ways.

Stephen Eide:

So what we thought we would do would be to have an event with a dual purpose. The first half of today's event will be about DJ himself and his legacy. Then the second half of the event, we're going to shift gears and talk about the future of mental illness policy reform. There's so much to talk about in the world of mental illness policy, both in terms of what has been happening as a result of reforms enacted a few years ago such as the reforms embedded in the 21st Century Cures Act, developments at the state level, the COVID context which changes everything. There's so much to talk about. So we invited a great panel of three individuals who can wear both hats. Three individuals who knew DJ well and knew his work well and also real leaders in the field of mental illness policy reform.

Stephen Eide:

I'm going to get to the panelists very soon and into the substance of today's discussion, but before that, I want to make two final introductory points. The first is that we do invite comments from the audience, comments or questions, but if you want to submit a question, you have to be signed in through the Slido platform. Most of you all are probably on Slido. If for some reason, you're on Facebook and YouTube, you're welcome to watch on Facebook or YouTube, but you need to be signed in through Slido in order to submit a question, which you can do through going through the Manhattan Institute's Twitter feed or home page. Also the last introductory point I want to make is I want to extend a special warm welcome to DJ's family members, a number of whom I know are in attendance today.

Stephen Eide:

So without further ado, the three panelists today that we have are first of all, Dominic Sisti. Dom is an assistant professor and Director of the Scattergood Program for Applied Ethics of Behavioral Healthcare at the Perelman School of Medicine at the University of Pennsylvania. Pete Earley, a well-known advocate and the author of Crazy: A Father's Search Through America's Mental Health Madness. And John Snook, Executive Director of the Treatment Advocacy Center. Dom, why don't we begin with you? What do you consider DJ Jaffe's legacy to have been?

Dominic Sisti:

Thank you so much, Stephen. I would just like to thank you and the Manhattan Institute for this opportunity to convey my thoughts and feelings about the loss of DJ Jaffe. I own DJ a debt of gratitude. He reached out to me in 2015 to thank me for stating what was obvious, that individuals with serious mental illness deserve access to high quality, ethically administered, intensive care just as anyone with a serious medical condition would receive. His first email came to me during the week after a controversial paper I wrote was published. I was receiving actual hate mail and it was the first item I corresponded with DJ. At the time, it was very... I also thought he was a really eccentric character. I would come to learn that actually, his eccentricity was actually electricity in the way that he advocated for his cause.

Dominic Sisti:

So you see, I was actually a very kind of green and relatively new bioethics professor at Penn. I was on the scene of what I thought was an obvious and massive medical ethics disaster. The way individuals with serious mental illness have been treated in this country represents a moral and ethical blight. Money is being spent, research is being conducted, but we're doing only slightly better than in the 1980s when individuals with mental illnesses resided in ramshackle, state-run facilities. In fact, we have regressed back to a period of imprisoning mentally ill people. DJ challenged the status quo in what he aptly labeled the mental health industry. He was unrelenting in his attacks and I must confess there were moments I felt a little uncomfortable being associated with DJ early on in my career because the Academy is often not a fan of outspoken advocates. But he proven right time and time again, both on matters of policy and matters of ethics.

Dominic Sisti:

I think DJ would also highlight the fact that I completely disagreed with him on certain things. For example, DJ refused to issue an opinion on mass shootings and gun violence more generally and its connection or non-connection to mental illness. The evidence was clear that it's the guns, but on this point, he told me he wanted to stay in his lane, to which I replied to an email in all caps, "This is your lane." We had a heated email exchange, but as always, we returned to our normal friendship based on our shared commitment to those with serious mental illnesses.

Dominic Sisti:

In closing, I want to extend my deep condolences to DJ's family, friends, colleagues, and all of you, who, like me, had the good fortune to intersect with DJ on our life's journey. He stands as an exemplar of a good troublemaker whose electricity will always power our fight for justice for people who are greatly ill. Thank you.

Stephen Eide:

Pete?

Peter Earley:

Yes.

Stephen Eide:

Care to weigh in on DJ's legacy?

Peter Earley:

Absolutely. I think the fact that we're using the term serious mental illness is part of DJ's legacy. I'm not sure when that term got coined, but I can absolutely guarantee you that DJ is the one who made it popular. A short time before DJ passed, he sent me an email and a follow-up telephone call urging me to write something about the American Disabilities Act and how the Justice Department was using it to shut down group homes. I knew about his cancer and I said to him, "Well, what's going on with your treatment? How are you doing? What's happening?" He immediately brushed me off. He didn't want to talk about that. That was pretty much DJ. He wanted to keep his eye on the prize and pushing the agenda that he believed would help the serious mentally ill was that prize. From the time I met him in 2006, he was always advocating for those he considered the sickest of the sick.

Peter Earley:

My father was a minister and I grew up listening to missionaries and the Bible. DJ reminded me, when I thought about him with his pony tail and, as he said, eccentric type personality, as kind of being a modern day mental health John the Baptist. He was absolutely certain that his ideas were what were needed to help others save lives and he talked about them incessantly every opportunity he had. He had no use, as we just heard, for the status quo and he was very impatient with those who kept that status quo. He's been described as of the garden party. I think DJ would have really enjoyed both of those terms. He was much more comfortable on the outside knocking on the door.

Peter Earley:

He started his advocacy, like most of us did, with the National Alliance on Mental Illness, but he soon grew impatient with NAMI because he perceived it as straying away from his cause, its roots of parents and serious mental illness. In fact, this is why DJ was such a bomb thrower, in 2017, he launched an effort to actually change the entire board at NAMI by flooding it with seriously mental illness advocates. The organization was so panicked that it changed its very rules to stop him from winning. At that point, he pretty much brushed them aside. He always supported the Treatment Advocacy Center, which was founded by his mentor and a person he greatly admired, Dr. E. Fuller Torrey.

Peter Earley:

I think that DJ was happiest when he started his own group where he could... And imagine this, this is a guy who just out of the blue sets up a website and decides Mental Illness Policy Org. He's going to use his policy wonkness to start advocating. 2015 I think it was, he asked me about writing a book and I said, "Well, I tell a personal story. Personal stories." He said, "I don't want to tell a personal story. I want to do policy." I rolled my eyes and said, "Okay, DJ. Good luck," because who reads policy books? Well, I was wrong. He got a major publisher to publish his book and he started being called on more and more because of his research and what he had to say.

Peter Earley:

He was instrumental in helping representative Tim Murphy pass the Helping Families in Crisis Act. He was instrumental in getting Dr. McCance-Katz approved as the first Assistant Secretary of Mental Health and Substance Abuse. He was invited to the White House. He was invited to give a Ted Talk. Much to his shock, he was invited to speak at the National Counsel on Behavioral Health, which is the largest mental health convention, even though his speech attacked the people who are members of that. So I think he felt in a way that he was actually being included.

Peter Earley:

DJ saw all those as opportunities to speak for people who are rarely heard and for their family members. As the parent of an adult son with mental illness, although DJ and I didn't agree on everything, I'm not sure anybody ever agreed on everything with DJ, his was a voice we're going to really miss because he had an enthusiasm and a deep commitment. I've talked to many parents who he talked to personally and for a guy who just started his own group, he did one heck of a job and I'll miss his voice and advocacy.

Stephen Eide:

John, as Pete noted, DJ had a longstanding relationship with Dr. Torrey, the Treatment Advocacy Center, and you worked with him over the years. What do you consider his legacy to be?

John Snook:

Thanks very much, Stephen. I tell an anecdote on our website that I included when we found out about DJ's passing. So I interned for the Treatment Advocacy Center a million years ago after law school and DJ was actually the... attended the first hearing I ever went to. He and I went up to New York City for a meeting on mental health. We quickly got into a bit of a fracas with the council members. DJ was yelling at somebody. It got pretty exciting. We ended up getting thrown out of the meeting. So the first City Hall meeting, the first mental health meeting I went to with DJ, the very first one I had ever gone to, I got thrown out of. It remains the only meeting I've ever been thrown out of.

John Snook:

It goes back to that same issue that I've always experienced with DJ. The conversation that day was the same as the conversation we've had now for nearly the 20 years that I've known DJ, is that if you prioritize everyone, then no one gets prioritized. His focus, and it's a focus that I think has really benefited the nation, is on those with severe mental illness. I think that's the reality of the conversation when it comes to DJ, is that his legacy is a real previously unconsidered focus on the prioritization and the needs of those with the most severe mental illnesses. We're going to talk a little later in this discussion about what that meant on the ground, but I think when it comes to family members, that's really the legacy that I think is so important. It's that idea that those with the most serious mental illnesses may need more than other populations we're talking about and there's nothing wrong with that.

John Snook:

The reality is that if we don't prioritize that population and don't ensure that they get what they need, things can really go wrong. For not just folks, not just their families, but for society at large. I think that's really the fly in the ointment that DJ was, was to say to SAMHSA, to say to the broader mental health community, "This population can't be ignored." When you say that everyone has a mental illness, that one-fifth of people have a mental illness, what you're doing is reducing the ability of those with the most serious mental illnesses to get the care they need. I think that's a legacy that is important to the conversation and I want to make sure we don't lose. Because I think that without having that strong voice of bringing us back to that population, I think we lose something.

John Snook:

I think one of the really interesting things we'll talk about is just how people from all walks of life and all spectrums of the political community have really embraced that issue. Whether it's through addressing data-driven justice or high utilizers, DJ was really proven right in a lot of that work.

Stephen Eide:

Yes, and I'd like to chime in too on DJ's legacy and talk a little bit about his work in the New York City context and also his relationship with conservative institutions. I think in the New York context, DJ will always be very closely associated with Kendra's Law, New York's assisted outpatient treatment program, the best assisted outpatient treatment program in the nation, which allows mentally ill individuals who have had a rocky history with incarceration and homelessness to be cared for and stabilized, kept safe in the community, provided appropriate supervision and support are there. DJ was, of course, instrumental in passing Kendra's Law in the late '90s. But not only that, he was extremely active in explaining it and promoting it over the past 20 years of its existence. Working with members of the media, journalists, editorial board members, city politicians, politicians at the city level and state level.

Stephen Eide:

Getting to know DJ, for me, was not only a constant education in mental illness policy, but education in advocacy at its best. One thing that I learned from him was that a lot of times, advocacy work is very mundane and boring even. But DJ was just indefatigable in taking meeting after meeting. He was always happy to meet with anyone to explain to them the importance of Kendra's Law and other reforms for helping seriously mental illness individuals. The point about Kendra's Law that he stressed more than any other that I think was especially important and often gets lost a lot in the debate is that Kendra's Law, assisted outpatient treatment, it's not just about requiring treatment for mentally ill individuals. It does require mentally ill individuals to comply with the treatment program.

Stephen Eide:

But more important than that, it requires the mental health serves the system to provide that treatment. DJ's central theme in his book, Insane Consequences, is that, as John touched on, far too frequently the mental health services system does not provide treatment services to the seriously mentally ill individuals and Kendra's Law is one of our best solutions to that problem in particular. There's no question in my mind that Kendra's Law would not have the profile it now enjoys, the level of support in New York, without DJ's efforts.

Stephen Eide:

Also in the New York City context, I can't fail to mention the role that DJ recently played in the debate over ThriveNYC. ThriveNYC was a major behavioral health initiative that Mayor de Blasio launched early in his mayoralty in which DJ early on saw, again, touching on John's points, was really more about general wellness and was not targeted enough to that four or five percent of New Yorkers with serious mental illness. It took a few years for the debate in New York City to catch up with DJ, but when it did, it really caught up in force. Everyone realized that despite all of these ThriveNYC efforts, all of this new funding, we still have this crisis on the streets and the subways and the jails and the homeless shelters.

Stephen Eide:

As a result of DJ's efforts, his very specific critique of why ThriveNYC was flawed, many city politicians, leading progressive figures in New York City now understand and now speak about the importance of having programs that target the seriously mentally ill and not just try to help everybody with mental health issues broadly speaking. I don't think that you would have seen that turn in the debate without DJ's efforts.

Stephen Eide:

Lastly, in terms of right of center institutions, DJ was a proud liberal Democrat, but he was also proud of the many relationships that he had with right of center organizations. People in the law enforcement community and in the criminal justice system. He wrote very frequently for publications such as National Review and he had this relationship with the Manhattan Institute. Mental health services, it's really staggering sometimes the level of government incompetence that you see with mental health services in America. It's just extraordinary how much money we spend, how little we get in exchange for in the way of results. We just keep making the same mistakes over and over and over again. But I don't know any serious conservatives who would deny that government has a solemn obligation to the mentally ill. Whatever else government may be responsible for, clearly it has a responsibility right here in addressing serious mental illness.

Stephen Eide:

I think that what DJ taught me, taught my colleagues and many other people in this world of right of center organizations is how to be much more constructive in our criticisms of mental health, what to be for, not just to be... what to be against. To me, if I may put it this way, kind of pro-government conservatives. That's what I think DJ's legacy is going to be. Does anyone else want to weigh in on any points about DJ's legacies? I wonder if we might be able to say more in terms of his work at building coalitions? Yes, he had this reputation as a bomb thrower, but in a way that attracted people. For a bomb thrower, he was really good at convening people and bringing them together.

Dominic Sisti:

I'd like to just say a word. I, too, would self-describe as a left leaning liberal Democrat and I always found DJ's rapprochement with the right and right of center organizations and publications to be so interesting and something to model actually. I've tried to do that in my work outside of the Academy to not become completely partisan on these issues because I do believe, Stephen, what you just said. I believe this is something we can agree that our government, our federal government and our state and municipal governments, have a solemn duty to protect the most vulnerable among us. That includes, of course, individuals with serious mental illness. DJ's ability to bridge that gap is something we all really, I think, should observe and try to replicate in our own behavior and our own work, and I am. So I appreciate that point.

John Snook:

Well, and Stephen, if I can build on Dom's comments, I think the reality that we would always come back to in conversations is that mental illness doesn't care who you voted for. You could build champions on any part of the aisle. It was really about what worked at the end of the day and what there was science behind. I think the conversations that we had with every legislator with the last name Murphy up on the Hill were indicative of that. We would have Senator Murphy from Connecticut and Tim Murphy from Pennsylvania, a Republican and a Democrat. Both very focused on the idea of reform, of needing to take on this population that had been ignored by the federal government for too long. That conversation, it did not matter in one instance who they had voted for in the last presidential election.

John Snook:

The issue really was one of the few bipartisan or nonpartisan issues that are out there. I think that's one of the really gratifying things about this work is that you can go into almost any community and have a conversation with a policymaker and they will have been touched by this issue. I think DJ's focus on getting away from the emotion and focusing on the science really helped push out the conversation forward because that's really how we get to solutions.

Peter Earley:

I think when it comes to the politics, I think you're both exactly right. DJ didn't care if you were a Democrat or a Republican, and we had many conversations where he expressed surprise that he was appearing on Fox News, he was part of the Manhattan Institute, and that he was aligning himself on Capitol Hill with more Republicans than Democrats because he strongly felt, as he discussed with me, that Republicans were not interested in just throwing money at it, but actually trying to change policy. He felt like they were doing a better job when it came to furthering the goals he saw. But let's not kid ourselves. In the mental health community, DJ was not seen as someone who waved in his personal beliefs. He was a strong advocate for AOT and the things he believed in and he made that clear from the start.

Peter Earley:

I think it was unfortunate in a sense because once you talk to him, you found out that you actually had more that you agreed with even if you're on the other side than you first saw. That lack of communication in the mental health community, I think it doesn't benefit any of us because in the long run, what DJ wanted was the same thing that people who oppose his views want, which is a better life for people with mental illness.

Stephen Eide:

One last point about DJ that recently occurred to me. In preparation for this event, I reread his book. It struck me, just evidence-based is a term that's thrown around a lot not only in the mental health world, but DJ really cared about evidence. This is a really serious book. I mean, it's just a terrific resource in terms of wanting to study up and get an introduction to any aspect of the mental illness debate. I recalled one instance when we were having a meeting with a high level figure in the de Blasio Administration about ThriveNYC and talking about DJ's issues with ThriveNYC. The topic of mental health first aid came up and DJ said, "Well, I don't think mental health first aid is a good idea." She said, "Well, why do you say that?" He responded, "Because I've read literally dozens of academic studies about mental health first aid and found it wanting as a result of that." He really did care a great deal about what the evidence said and his book really shows that.

Peter Earley:

I think that Dr. Fuller Torrey said it best in a tribute to DJ when he said that most of us get these huge studies, these 150 page reports, 160 page reports with footnotes, et cetera, and we read the executive summary and we have our own views on what we're going to believe and what we're not. DJ actually read the whole darn thing and then he looked up all the footnotes and he checked that. I often would put something on my blog that he disagreed with and he'd say, "Where's your evidence? What are you quoting? Where's that link?" And led to some lively debates, but I never met... I've met a lot of policy wonks, self-described, in Washington, D.C. and he was at the top of the list. You couldn't bring up any subject in mental health without him citing some report or study. Of course, they always agreed with his point of view. But he definitely backed up his points with studies that he felt proved that he was right.

Stephen Eide:

Well, we could go on for a long time about DJ and his legacy, but I do want to leave plenty of time for this discussion about policy reform, the future of mental health policy reform. John, I thought I would begin with you to ease our way into this topic, what we should be thinking about in terms of the near term prospects of mental illness policy reform when talking about the 21st Century Cures Act. The 21st Century Cures Act was federal legislation that President Obama signed into law in December 2016. DJ was very much involved in mental health portions of that law. I guess the question I have is how has the implementation of that law gone? To what extent do we need to be thinking about implementation versus to what extent do we need to be thinking about future legislation to address the unfinished business of the 21st Century Cures Act?

John Snook:

Thanks, Stephen. I think one of the realities when it comes to the 21st Century Cures Act is we need to think about just how much of a sea change it represented in federal mental health legislation and focus. It is not an exaggeration to say it was the most extensive bill passed since the Kennedy Administration. We simply hadn't focused on mental illness and especially on serious mental illness since the Kennedy Administration. That's just a reality. So there are both the macro and the micro with the 21st Century Cures Act, but I don't think you can have any conversation about 21st Century Cures or DJ without talking about the reality of reshaping SAMHSA.

John Snook:

One of the biggest drivers of reform, Senator Murphy, would regularly point out that the strategic plan of SAMHSA prior to the changes, that it was a more than 100 page document that set the strategic plan for the agency for years going forward didn't mention schizophrenia once. That's a Democrat. That's not a bomb throwing Republican saying we need to shut down agencies or we need to get rid of federal government. That's a strong Democrat focusing on the fact that SAMHSA just wasn't doing the work that they needed to do. So when you talk about 21st Century Cures, I think the most important aspect was the establishment of both the Chief Medical Officer, Dr. Everett, and the Assistant Secretary, Dr. McCance-Katz. That position and those positions both really led a sea change in the focus of SAMHSA.

John Snook:

It was the first time we had seen SAMHSA come out in favor of assisted outpatient treatment on a micro level, but it also broadly was the first time we had seen SAMHSA really talk about the fact that the incentive structures that were in our system really allowed the most seriously ill to fall through the cracks and end up in our jails and prisons. I think there is a powerpoint done by Dr. McCance-Katz that talks about the inability of our system to engage the most seriously ill population that I would recommend that everyone take a look at. It is such a sea change from what SAMHSA was prior to her establishment. I think that is really, when we talk about 21st Century Cures, that's where we need to start.

John Snook:

But when you dive into some of the changes that we hoped would happen, I think the reality is there is still a significant amount to do. I look at the provisions that Senator Cornyn was integral in getting implemented, the provisions around not only decriminalizing mental illness, but really focusing on the data collection aspects. There are provisions in that bill that would require the federal government to report on the costs of imprisonment of individuals with serious mental illness. The involvement of mental illness in incidents involving law enforcement, both individuals with mental illness being hurt and officers being hurt. Those are provisions that if they had been followed through by SAMHSA and DOJ, I think we would have some really helpful data for the conversations that are taking place all throughout the country.

John Snook:

I often say that it's great that my organization is the receptacle of the best data on law enforcement involvement with mental illness. That's great for our organization, but it's terrible for our country. A random nonprofit in Virginia should not be the receptacle for this information. That is information the federal government, the Attorney General, should be collecting. It's just not happening. That's the reality on the ground, is that sort of data just isn't happening. I think that's where the biggest hole is. But when it comes to issues like HIPAA, reforming Medicaid to address the IMD exclusion, that idea that the federal government would discriminate against people who need inpatient care, or just simply focusing on the way that communities provide care to the most seriously ill, I think we really have seen a sea change.

John Snook:

As we move forward, I think one of the most exciting things that we've seen is the assisted outpatient treatment grant that were created both by 21st Century Cures and then a few bills previous to that. They have really proven out to be some of the most successful federal mental health programs that we've seen in decades. Communities like Reno, Nevada and rural Alabama seeing million dollar savings from implementing the program. Those are the sort of things that I don't think we would have seen prior to 21st Century Cures and it's an opportunity to build on in the next administration. As SAMHSA continues its reforms, it's less these specifics and at the end of the day, it's the idea that we aren't going to ignore serious mental illness simply because they may not have as big a constituency as some other issues. I think that's the opportunity that 21st Century Cures presents and it's really the legacy that I think DJ would want us to focus on, is that idea that we are not going to allow those most in need to be ignored.

Stephen Eide:

Thank you for that, John. Pete, same question. Sea change or not?

Peter Earley:

Yeah, definitely, but waves also can pull back. What I mean by that is DJ was instrumental in passing the Helping Families in Crisis Act, which is part of the 21st Century Cures Act that applies to mental health. Now, it's interesting to note what John just said because when Dr. McCance-Katz was the first Chief Medical Officer at SAMHSA, she left and wrote a scathing review saying the agency didn't even believe in mental illness. That's where SAMHSA was. Dr. Torrey pointed out that in its long range plan, as John suggested, there wasn't even a mention of schizophrenia. So the original bill out of the House got watered down when it hit the Senate. But what happened then was once it was implemented, DJ, Dr. Torrey, and others were able to get Dr. McCance-Katz in. As the head of SAMHSA, she has implemented the key parts that DJ and others were fighting for.

Peter Earley:

What am I talking about? I'm talking about AOT, assisted outpatient treatment. I'm talking about the IMD exclusion. The Democrats and disability group stopped it from being repealed. But what Dr. McCance has done in the Trump Administration is allowed waivers to be granted if states wanted them so they could get around the 16 bed rule. What's missing, of course, is there was a great demand by parents to do something about HIPAA, which is confusing. How many parents have come to me and said, "I took my kid to the hospital in a psychotic break and now they won't even tell me if he's a patient." There were efforts to change that. What Congress did is took the middle road and said, "No, let's just better educate people." Well, unfortunately that's not been a high priority.

Peter Earley:

But those are the kind of things that DJ was after. AOT, IMD. All of these aimed at people with serious mental illness. I think John hit it right ton the head when he said that Dr. McCance-Katz has really been able to do a sea change. The question is after the election whether a new group will come in and simply revert or if these policies are in place in such a strong way that they will continue and move forward? That's really important when you have the Treatment Advocacy Center who has been so proficient. I mean, there's only three states that don't have AOT now and Treatment Advocacy Center is pushing for a bed instead. But with DJ gone, the Treatment Advocacy Center has lost an important ally in trying to get those reforms through in my opinion.

Stephen Eide:

Thank you all from the audience. I see a lot of great questions coming in. I'm going to get to them as quickly as I can. But Dom, we really need to say something about COVID I think. Basically my question is what has COVID meant for the service systems that serve seriously mentally ill individuals? Not just in the mental healthcare system, but other service systems such as criminal justice, homeless services, and so on.

Dominic Sisti:

Yeah, it's been obviously a significant disruption. Let's just first say that the pandemic, I think, has cast a very bright light on the systemic failures in society, not just in mental healthcare, healthcare, but across the board. In the context of healthcare, I think we were focused in January, February, March, April, May on very specific issues related to ventilator and PPE triage in major medical centers and ICUs. Meanwhile, thousands of nursing homes and other assisted living facilities or congregate living facilities were ignored. We know that at least 40%, I'd say, of the 200,000 plus deaths we're at now I think, 40% of those have been in congregate settings. We also know that in those settings, there's a large number of individuals with serious chronic mental illness in nursing homes. Owing in part, I think, to the fact that there's so few psychiatric hospitals and beds. I'm sorry, I'm getting some feedback from somewhere.

Dominic Sisti:

So in terms of inpatient, with residential living facilities, these were... With regard to jails and prisons, we know about 30% of jail and prison inmates have a serious mental illness. The majority of these individuals are Black and many were incarcerated for crimes associated with their mental illness pursuant to really extreme or sentencing guidelines. So at this point, I have a note here. 225,000 cases of coronavirus in jails and prisons. That's in infection rate about five times the community and a very high mortality rate compared to the community. Inpatient psychiatric settings pose similar challenges. All these places are designed to provide group and milieu therapies. So obviously now those are impossible. Seclusion and isolation are generally harmful for these patients.

Dominic Sisti:

So I think it's clear now that we need to learn from this pandemic and develop settings that are designed and intended to prevent the spread of infection, but also allow for necessary in-person contact. So single rooms and physical space to allow distancing for group and other kinds of therapies. All of this, I guess, yeah, I think the pandemic has taught us that we need competent leadership that respects and accepts science much like we have... This is a similar problem that DJ often complained about, that evidence wasn't either being understood or accepted about the realities of serious mental illness. We need that same urgency in accepting the science about COVID-19 because at the end of the day, the folks who are shouldering this devastating crush of this pandemic are vulnerable Americans and individuals with serious mental illness are those people.

Dominic Sisti:

So I think the COVID pandemic is a lesson to all of us that we need to be ready to adapt and create systems that are resilient to this kind of disruption, but that we also don't lose our focus, that we don't forget about individuals in congregate settings, nursing homes, and places that are often forgotten in favor of acute care settings and ICUs. Those would be some of the reflections I would put out there for mental health. I also think that we need to understand and develop better systems for service delivery in-person. Again, because these are individuals who need their caregivers in hospital settings and in the community. Individuals who are left alone to die oftentimes in nursing homes. This is not something that should happen ever again. Many of the individuals in nursing homes died alone. Many of these individuals are mentally ill. That to me is a moral and ethical embarrassment. It should never happen again.

Dominic Sisti:

So I'll leave that. I'll just stop there. There's a lot more to say about the impact of COVID on mental health policy, but those are some of the key things that I've been thinking about.

Stephen Eide:

I want to take up a question that we had from someone attending the event named Andrew [Slaten 00:45:57] and he asked about residential communities that can house mentally ill individuals for short and long periods of time. We talked a little bit about hospitals. As he says in his question, they're out of reach for many without financial resources. These are places that offer very high levels of care, but they're very, very expensive. Is there any way that we could look to expanding that option and just making them more available to people with limited financial resources is the question.

Peter Earley:

Well, I'll jump in. Because of our history and our warehousing and the abuses that happened in state hospitals, we passed a number of laws that really... and deinstitutionalization, wanting to empty all of these places for financial reasons, we've done the IMD and others and there's a tremendous of fear of returning any kind of state hospitals. Everything wants to be built in the community. Unfortunately, what we're seeing is even in places where you have 72 hour holds, people are being held and released without treatment. People are ending up in jails and prisons. My son's case, he was, after much badgering, was allowed to stay in the hospital for 14 days. Well, what was the treatment? The treatment was just take your pill, take your pill, take your pill. It really wasn't any kind of treatment or humane type thing. The truth is we've always had mental hospitals. We didn't close them all down. Because we had McLean Hospital, we had facilities like Gould Farm, we had places like CooperRiis, which they're a question or of mentions.

Peter Earley:

But you had to be very wealthy. I mean, Jessie Close's son Calen spent two years before in McLean Hospital before he could get the symptoms of schizophrenia under control. Two years at more than 20,000 a month. Who can afford that? The question is there is a push to return to safe, humane state hospitals, to a realization that people need a longer time. But the question is will our government or states ever fund those at the same level and support them at the same level as a McLean Hospital? So it's a tricky path because you need a combination of community care robustly funded, but you also need, we're seeing, and DJ would argue for longer term care for those people who need a longer time to get better. Unfortunately, we're like dogs fighting in scraps thrown off the table when it comes to, oh, community versus state hospitals rather than being unified in that I believe.

John Snook:

I think Pete is exactly right. The issues finally are starting to coalesce. I think for years, we saw various aspects of these issues being advocated for. We would have conversations about the need for hospital beds while another group was having conversations about insurance parity while another group was having conversations about the need for peer support. The reality is if this was any other illness, you would never have those bifurcated conversations. You would have a conversation about a consistent, effective, well-funded treatment system. I think that's where we're finally getting to. We shouldn't be forced to have Dr. Sherin, the head of the Los Angeles Mental Health Department going into the newspaper and talking about his deep fear of the loss of board and care facilities because there is going to be nowhere for the population of seriously mentally ill to go. We shouldn't be at that point. We know what works and we know funding it effectively saves us money.

John Snook:

So that's where I think we're going. I think Pete really flags the important aspect here that a full continuum of care where we're all rowing in the same direction gets us where we need to be. I think the conversations that DJ points us back to of focusing on the evidence and on addressing those with the most serious mental illness helps us keep that conversation moving in the right direction. So I think there's a lot of use to that legacy.

Stephen Eide:

One more question from the audience from a woman named Linda [Emeyo 00:50:31] in California. She asks, we've talked about funding places like McLean Hospital, we've talked about the IMD waiver, her question is about legal changes regarding civil commitment. She says, quote, "I'm a mother of twin daughters with schizophrenia. A primary obstacle to treatment here in California is the legislative attitude regarding violation of civil rights and involuntary treatment. Even assuming we get some movement on the fiscal front, is there any prospects of changes on the legal front?"

John Snook:

I'll jump in just because this is sort of our bailiwick and I'll turn it over to everyone else. I think California is recognizing this in two ways. There was a bill that was passed by the legislature this session that would really modernize and prioritize their assisted outpatient treatment program. I think that is a really important step to get them in the right direction. But I think the missing piece, the piece that everyone in California is talking about is the lack of any sort of effective oversight of the mental health system there. I think what you're seeing in the conversations that are being short handed as civil liberties is really a pushback against any sort of actual oversight.

John Snook:

Right now, the law that is being discussed is saying once someone is 5150'd, which is the sort of pick up in California, once someone is picked up eight or more times, then the system can step in. You say if this was any other illness, and we said we're going to let someone fall into crisis, we're going to have eight strokes before treatment can be provided, people would be up in arms. I think that's where California is still broken, is that inability to really step in and say, "We're going to provide oversight and not allow you to let the most seriously ill fall through the cracks.

Dominic Sisti:

I would second that, John. I mean, I think one of the other legacies of DJ and the Cures Act is to advance this idea of conceptual parity where mental illness is seen as illness. It's not seen as something any different than illness. The idea that we would not hospitalize or a person wouldn't be hospitalized with, say, an aneurysm in their aorta until it bursts, it makes no sense, right? That's what it's like in mental health. When you have a psychotic episode, then you get hospitalized. That's too late. Anecdotally, just in my teaching of psychiatry residents, young psychiatrists see this. They see that the commitment laws are the bar is set way too high and it's set up to fail essentially. That these folks, by the time they're that sick, they will cycle back through the CRCs, the emergency departments, the jails, the homelessness. The young psychiatrists see this and I do think that that's promising. I think they will be the leaders in the future that will make this change.

Peter Earley:

Look, I want my son's civil rights protected, but having a standard that calls for dangerousness is a fool's standard. First of all, you can't predict dangerousness and waiting until it happens delegates people to go in jails and in prisons. The Treatment Advocacy Center released a report this week that concluded that... It looked at civil commitment laws and it says we have 50 different states all doing it differently. Everyone has their own. I would argue we even go beyond that. In Virginia for instance, Fairfax County where I live, because you have three administrative law judges who really take a negative view about commitment, it's much harder to get somebody committed than the adjoining county.

Peter Earley:

So you have this patchwork of people trying to follow a law that is a fool's standard. We want to protect rights, but we also want to have a right to treatment. That people who are sick and can't speak for themself should have not be abandoned on our streets. We have to put in places that are in England and in France and places like that where they recognize someone's illness, they recognize they need to safeguard those people from being abused, but they step in and help them get better.

Stephen Eide:

We are running very short on time and we at the Manhattan Institute are committed to ending things on time. I wanted to give our panelists just a opportunity for very brief, like one minute or so, closing remarks. Anything else you would like to add? I have a message from the family I would like to read at the very end. John, you want to begin? Very briefly. John, I think we're not hearing you. Dom, you want to leap in while we wait for John?

Dominic Sisti:

Yeah, sure, I'll just jump in and maybe John will come back. Yeah. I guess I just want to again express my condolences to DJ's family and friends. It was really a privilege. Honestly, this was a privilege to be able to read his book in advance and comment on it. That made me feel so good and DJ was so generous in that way. He included everyone in all of his work. He gave credit where it was due and he pushed me to grow as a scholar and as an advocate. I guess I'll leave it there because that's how I'll always remember DJ, as a mentor and as a friend.

Stephen Eide:

Pete?

Peter Earley:

I love DJ's enthusiasm. He had an energy and I think even those who disagreed with him and didn't like him have to respect the fact that DJ walked the talk. I mean, he deeply cared about parents such as me and others who are dealing with our loved ones who have a serious mental illness. He made them a priority and for that, I'll be forever grateful.

Stephen Eide:

John, you ready to go?

John Snook:

Yes, sorry about that. I think I would echo Pete and Dom's comments and thank you, Stephen and the Manhattan Institute for taking the time to put together this wonderful memorial for DJ in remembrance of him. So I think the one thing that I would ask everybody to do, seeing as this is a DJ Jaffe memorial, is to get involved, is to one, buy his book and read it and get yourself educated on these issues. I think a great legacy is to both buy his book and to learn from it and then take those lessons and really use them. I think DJ was all about action, not just talking about things. I think that's a great legacy that we can all take up.

Stephen Eide:

Thank you all for that. As I said, we have a message from Bob Jaffe, DJ's brother that I would like to read. On behalf of DJ's family, we are forever grateful for your kindness at the time of DJ's passing. Meaningful and effective mental health policy was his passion. He was blessed to be on the team with you all. Thanks for your expression of love and caring for our beloved brother DJ.

Stephen Eide:

The point I'd like to conclude with is actually about team DJ as well. I say this speaking to the other panelists and the members of the audience. DJ set a very high bar in terms of the depth of his commitment and his knowledge of the system, his energy. It's hard to think who can actually replicate him. He was unique. But he also stood at the center of this coalition that I think all of us are sort of, at least loosely, affiliated with. My hope is that this coalition can stay together, not just because it's what DJ would have wanted, but this is the model for reform. This is model for reform that was behind the Helping Families in Mental Health Crisis Act and many other reforms. It was the reform that DJ modeled for us. So the prospects for future reforms, I think we really need to be thinking about following the path that he laid out for all of us.

Stephen Eide:

Thank you so much to Dom, John, and Pete for participating. Thank you all, audience members, for attending today's event. This concludes today's event on DJ Jaffe's legacy and the future of mental illness and policy reform.

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